Keywords
COVID-19 - bioethics - human rights - oncology
Introduction
Bertrand Russell's quote in History of Western Philosophy (1945) “To teach how to
live without certainty, and yet without being paralysed[sic] by hesitation, is perhaps
the chief thing that philosophy, in our age, can still do for those who study it”
reflects the global uncertainty the humanity is facing for the past 2 years.[1] In December 2019, cases of pneumonia with unknown etiology were discovered in Wuhan
City, Hubei Province of China,[2] and this quickly spread across the world to trigger a global pandemic and caused
grave misery and deaths worldwide including in India.[3]
[4]
[5]
COVID-19 brought in a plethora of events that impacted health care not only as a disease
on its own but also other diseases. Cancer patients were left stranded mid-therapy,
thus worsening their prognosis. The COVID-19 pandemic caused significant fatalities
and highlighted both the advantages and drawbacks of global health care systems.[6] Even after 3 years since the initial report, the virus continues to mutate, and
in spite of global vaccination initiatives, it still infects and spreads, thus challenging
the health care providers and health care systems globally.[7]
[8]
[9]
[10]
[11] This uncertainty about future and unpredictability of this disease have led to multiple
medical and ethical dilemmas in oncology [11] reflecting its impact in a clinical service model.
Impact on Oncology
Patients with cancer are obliged to attend health care institutions more frequently
than patients with other diseases because of the nature of the disease and its many
treatment techniques. Multidisciplinary teams must be fully involved in the treatment
of cancer patients at all stages of the disease, from diagnosis through survivorship
or end-of-life care.[12]
[13] In addition to various therapeutic interventions, cancer patients need multiple
hospital visits for assessment, diagnosis, staging, or monitoring the effects of treatment.
As any unjustified divergence from the well-established norms may result in fragmented
and subpar care and affect patient outcomes, these clinical services should operate
in harmony and on schedule with strong dedication and compliance from both patients
and health care workers.[14]
When compared with the general population, cancer patients are known to be vulnerable
and susceptible toward airborne microbial infections and are at increased risk of
hospitalizations and mortality due to the ensuing pathogenesis.[15] Regarding COVID-19, research from China has indicated that there was no rise in
the prevalence of COVID-19 infection in cancer patients compared with the general
population. However, cancer patients showed a higher incidence of serious events such
as hospitalization, respiratory complications, and need for care in intensive care
units.[16]
[17] Health services were overburdened during the epidemic principally because COVID-19
care was given priority over other illnesses.[14]
[18]
[19] The health care sector was stalled by the fear of COVID-19 transmission in both
the public and health care practitioners. In these uncertain times, oncology and health
care settings concentrated on four key areas: (1) to protect patients from contracting
SARS-CoV-2 and reduce the risk factors for COVID-19-related mortality in the case
of infection; (2) to stop COVID-19 from spreading throughout health care facilities
and the general public; (3) to reduce the danger of COVID-19 transmission to health
care personnel; and (4) to properly distribute resources among all patients during
a period of resource shortage.[20]
Global Data from Oncology Service Sector
Global Data from Oncology Service Sector
In the course of the pandemic, the number of cancer patients receiving diagnoses and
treatments decreased significantly, according to several cancer centers and societies
around the world. According to studies, the pandemic had a significant impact on all
facets of cancer care, including screening, diagnosis, treatment, palliative care,
and follow-up. For at least a fraction of the individuals who would have received
a cancer diagnosis during this time, it is likely that these decreases led to delayed
diagnosis and inadequate treatment. Thus, the negative consequences of COVID-19 significantly
affected the cancer patients across the globe. To substantiate this, seminal studies
by Jazieh et al[14] and Ranganath et al[21] reported that a big majority of cancer patients were exposed to varying degrees
of harm in the pandemic, including individual, societal, medical, and ethical problems.[14]
[21]
Doctor–Patient Paradigm and the Principlist Approach
Doctor–Patient Paradigm and the Principlist Approach
The unanticipated interruptions in cancer care pathway had detrimental impact on the
timely diagnosis and treatment of cancer. The above studies clearly show that cancer
care was suboptimal and ethical concerns were evident during this period. In cancer
care, a stronger trust and bond form between patients, families, treating physicians,
and the support staff because the condition is serious in nature and treatment lasts
over longer periods of time. For the patient's physical and mental health, as well
as their compliance with treatment modalities, the development of positive trust and
a strong understanding between the oncologist and the patient is crucial, which was
affected during the pandemic.[22]
[23] Unfortunately, the recommendations and measures put forward during the COVID-19
pandemic period failed to take the feelings of cancer patients and their morale into
consideration, jeopardizing the desired trust-based physician–patient relationship.[24]
When the situation is analyzed according to Beauchamp and Childress' four ethical
principles of beneficence, nonmaleficence, autonomy, and justice, the oncology services
during the pandemic faced immense challenges. Deviation from the standard treatment
plan, reduced number of treatment sessions, and delayed follow-ups would upset cancer
patients, make them feel neglected, and pose risk to their lives.[25] This shows denial of beneficence and imminent harm or maleficence, which was compounded
by uncertainty and suboptimal standard of care during the pandemic.[20]
Autonomy of cancer patients during the pandemic was infringed upon as a sequela to
this. The decision-making to proceed with cancer treatment was not in the hands of
patients or their families although potentially fatal risk is theoretically more associated
with cancer than with the pandemic itself. The uncertainty, fear, and anxiety associated
with possible SARS-CoV-2 infection influenced the patients' decision regarding their
treatment. The situation was worse in people who developed recurrence or metastasis
as immediate therapeutic interventions were not easily available. Due to the lockdown,
there was acute shortage of anticancer and supportive drugs, and break in supply chain.
This shows how nonmedical social contexts that are vital, can interfere with the ethical
principles embedded in health care delivery.
Social justice and equity were skewed unfavorably, thus vitiating the fourth principle,
which states that all patients should be treated equally.[26] However, an equal treatment does not mean the same treatment for all. The COVID-19
pandemic was an eye opener detailing the imbalance between medical needs and the available
resources in health care systems across all nations. This resulted in clinical decisions
that affected patient access to necessary care, quality-of-life, or end-of-life situations
violating a patient's rights as an individual.[17] In terminally ill cancer patients, the futility of the treatment and choosing less
aggressive life-saving interventions would have been the observed protocol, which
is generally substantiated even in non-COVID periods in the past.[27]
[28] From the clinicians' perspective, dilemma occurred when patients with a high chance
of cure and a long life expectancy, like early breast cancer, get neglected due to
circumstances, which jeopardized all four ethical principles negatively in clinical
oncological services.
Universal Declaration of Bioethics and Human Rights Perspectives
Universal Declaration of Bioethics and Human Rights Perspectives
When the pandemic health care services are analyzed within the scope of the Universal
Declaration of Bioethics and Human Rights,[29] the national and international guidelines and restrictions imposed on the general
population were infringed upon. These aspects said in the articles and guiding principles
are described in subsequent paragraphs.
Article 3: Human Dignity and Human Rights
Article 3: Human Dignity and Human Rights
Imposing travel restrictions lead to inconveniences to access of patient care. The
right to health care and patient's expectation to be treated in illness in a dignified
manner were not always met within global contexts as reflected in studies.
Article 4: Benefit and Harm
Article 4: Benefit and Harm
This reflects Beauchamp and Childress's [30] principles of beneficence and nonmaleficence. Studies show many clinical trials
and research activities faced setbacks[21] delayed treatment. This hampered the expected health benefits and possibly caused
harm to patients. These aspects need to be revealed in future studies. The risk-benefit
ratio in COVID plays a great role in imparting effective health care despite the lack
of evidence was followed Social distancing and other clampdown measures require rethinking
based on the benefit and harm principles.
Article 5: Autonomy and Individual Responsibility
Article 5: Autonomy and Individual Responsibility
For those who have had access to care, oncology services followed this as the standard
operating procedures. However, prioritization of care in resource-limited settings
affected the autonomy of the patient, as explained earlier. Mandatory vaccination,
emergency use, and reuse of drugs should be with the choice of the individual patient
and not just for the common good.
Article 6: Consent
Most nations experienced deficits of manpower of health care workers and infrastructure,
access to care, and availability of medicines. During the COVID period, the additional
comorbidities associated with the pandemic made the situation worse. There were reports
wherein the patient's right to consent for a given intervention would have been affected
as many were alone at critical stages of the disease and the health care team or the
institutional guidelines decided on triage, treatment, and end-of life decisions without
respecting this important principle.
Although many clinical trials were halted during the pandemic,[21] there were global efforts in vaccine development and clinical trials. Participants
at multinational centers underwent explicit consent protocols in accordance with article
6. Policy decisions notwithstanding, informed consent forms an integral part even
in such a dire situation of COVID.
Article 7: Persons without the Capacity to Consent
Article 7: Persons without the Capacity to Consent
It is evident that the pandemic caused panic and chaos within the health care sector.
There were instances wherein the general conditions of many cancer patients during
their course of treatment suddenly deteriorated, and isolation protocols and a large
number of incoming patients burdened the daily functioning of cancer centers. It is
expected that in the absence of family members in attendance and in poor general conditions,
the provision of special protection available to the cancer patients was suboptimal
or compromised.
The pandemic outbreak witnessed many therapeutic interventions that were not evidence
based such as postconvalescent plasma infusions, antimalarial drugs, and certain antiviral
agents, to name a few. The medical fraternity utilized them without scientific evidence
and many patients suffered complications of such research interventions as COVID-19-related
complications.
Article 8: Respect for Human Vulnerability and Personal Integrity
Article 8: Respect for Human Vulnerability and Personal Integrity
Cancer patients are vulnerable and depending upon their stages in continuum of care,
the ability to provide consent varies. When there is a shift from Kantian utilitarian
principle at early stages of treatment to a patient-centered deontological approach
at later stages, the ethical framework changes from a health care provider's perspective.
In advanced end-of-life situations, a family-centered approach sets in wherein family
takes decisions on behalf of a vulnerable relative. These ethical paradigms in cancer
care were affected due to COVID-19 protocols and affected the human rights of such
patients as well. Vulnerability is universal in these COVID times, leading to the
crossing of barriers that would otherwise not have been reported.
Article 9: Privacy and Confidentiality
Article 9: Privacy and Confidentiality
In many countries, the initial panic reaction after disease outbreak led to disclosure
of patient identities and family whereabouts in the media. In an attempt to “keep
safe,” many digital platforms were launched and the societal impact of those initiatives
is yet to be analyzed with regard to data protection and patient confidentiality.
Another issue was how the patent's privacy and confidentiality were protected in crowded
hospital wards, hospital corridors, and in do-or-die situations. The nature of the
disease and associated comorbidities played a huge role in cancer care settings competing
for access to care in compromised infrastructural conditions.
Article 10: Equality, Justice, and Equity
Article 10: Equality, Justice, and Equity
Beauchamp and Childress's [30] principle of social justice echoes here. Duration of cancer treatment is lengthy
and requires multiple visits to the health care facility. When the provisions of cancer
services were affected due to the pandemic protocols and allocation of resources,
patients did not receive the aspect of equality grounded in article 10 as non-COVID
patients belonged to a lesser priority category from the service providers' point
of view. As they were a medically compromised vulnerable population, priority for
vaccination was ensured in the majority of nations for cancer patients. Enforced lockdown,
quarantine, and restricted movement of persons across district/state borders could
also trespass the lines of justice in access to care.
Article 11: Nondiscrimination and Nonstigmatization
Article 11: Nondiscrimination and Nonstigmatization
In many communities, stigma still exists for cancer patients; however, cancer awareness
programs work in a positive manner to eradicate such fears at the societal level.
Unfortunately, during the initial phase of the pandemic, panic and chaos among the
general population created unrest and fear in the realm of social psyche. This resulted
in inadvertent isolation strategies wherein COVID-positive patients were discriminated
and stigmatized in many communities. Denial of access to cancer care resulted as sequelae
to this. Declaration of the names of COVID-afflicted patients could lead to positive
discrimination. Surprisingly stigmatization did not rally as the infectious period
of the disease was short and a multitude of people were affected by the disease in
a short period.[27]
Article 12: Respect for Cultural Diversity and Pluralism
Article 12: Respect for Cultural Diversity and Pluralism
The observable trends in general hospital population influenced the paradigm of cancer
care services also. Many cancer patients in end-of-life situations were forced to
spend their last days in isolation away from family and friends. There was lack of
access to perform their religious rituals from a spiritual perspective. Further, many
COVID-positive dead bodies were cremated in mass graves in the absence of family members.
Due to the fear of spread of the disease, the utilitarian approach enforced by the
governments violated article 12 in many instances. Being a pandemic, indigenous traditions
were acceptable at times, helpful to some extent, but many required diametrically
opposing changes.
Article 13: Solidarity and Cooperation
Article 13: Solidarity and Cooperation
The pandemic was an example of human beings raising their collective conscience as
a species through solidarity and transglobal cooperation. International efforts in
preventing the disease, vaccine development, and vaccination drives illustrate this
aspect. Although there was a palpable decrease in cancer services across nations,
communities of different cancer support groups, NGOs, and professional associations
gave advice and support to patients mainly through digital platforms and social media.
This pandemic witnessed the coming together of people voluntarily to dispel the afflictions
in myriad avenues.
Article 14: Social Responsibility and Health
Article 14: Social Responsibility and Health
Under the supervision of WHO and opinions from the international panel of experts,
governments worked for the good of all—a utilitarian approach. Professional organizations
gave updates on treatment protocols through public health initiatives. The benefits
aimed at the general populations to which cancer patients form an integral part.
The highest attainable standards of care were not achievable in the first year of
the pandemic as humanity was not prepared for such a large-scale global catastrophe.
The disease affected both developed and developing nations, and different income categories
of countries alike. There was shortage of cancer medicines and other lifesaving or
supportive care essentials, and supply chain worked hard to keep up with the demands.
This was due to logistical hardships in procurement of pharmaceutical agents, infrastructural
issues, and suboptimal productivity of drug manufacturers during that time. Loss of
jobs and income affected many cancer patients and there were many cases of skipping
the treatment due to financial constraints.
The pandemic was a testing time in terms of personal responsibility that fell upon
the shoulder of every individual. In addition to maintaining social distancing, quarantine,
and other security measures, the spread of false information and news regarding the
disease was a challenge to achieve. Isolation for prolonged periods and uncertainty
in job prospects coupled with fear and anxiety took a toll on the mental health of
a lot of individuals. This was not adequately addressed during the time.
Article 15: Sharing of Benefits
Article 15: Sharing of Benefits
The pandemic witnessed a well-focused and accelerated research program in an attempt
to contain, treat, and prevent COVID-19 infection. The changes that led to a paradigm
shift in medical developments were shared at international platforms, and efforts
to share those benefits were evident transnationally. An example would be vaccine
development and provision of its availability in nonmanufacturing countries through
sharing of technological assistance and international treaties. This also included
capacity building, clinical trials, and training workforce in the fight against the
disease. Sustained efforts in this domain halted many routine cancer-related research
and screening programs, which could have a detrimental effect in upcoming years. In
the wake of the pandemic, the focus of the scientific community and the public was
the international sharing of information on a variety of topics regarding the viral
genome, mode of transmission, incubation period, vulnerable groups, signs, and symptoms.
Information on all these was valuable.
Article 16: Protecting Future Generations
Article 16: Protecting Future Generations
The true biologic impact of the disease on the future generations is still unknown.
The virus by virtue of multiple cycles of significant mutations illustrated unpredictability
of human disease development and its impact on medical science and social well-being
of individuals. Vaccinations could prevent or reduce the seriousness of the disease
as of omicron variant of COVID-19. The manner in which vulnerable cancer patients
may be affected with subsequent significant mutations of the virus is unknown, which
adds to the uncertainty to the future.
Article 17: Protection of the Environment, Biosphere, and Biodiversity
Article 17: Protection of the Environment, Biosphere, and Biodiversity
There are debates on the initiation and mode of spread of COVID-19 virus to the first
human host. Investigations on the developmental biology of the virus, its viral signature,
may shed light on the mystery of whether it was transmitted from across species (putatively
from bats) or was artificially created under laboratory conditions. In either case,
article 17 details the need for respect while dealing with environment and preserving
our biosphere. Adaptive laws and policies are required to integrate new environmental
and health knowledge in specific socio-ecosystems. Respecting and nurturing the biodiversity
of the planet also means holistic interactions within sociocultural contexts and preserving
and protecting animal and human health along with environmental health.
Article 18: Decision-Making and Addressing Bioethical Issues
Article 18: Decision-Making and Addressing Bioethical Issues
Promotion of professionalism, honesty, integrity, and transparency in decision-making
reflects here. The brunt of the disease bore heavily upon the health care workers
during the pandemic. However, the professionalism and true workmanship of many supporting
systems were put to test during the pandemic. Intergovernmental and interdepartmental
consensus on strategic planning and care delivery resulted in issues on triaging patients,
resource allocation, and prioritization. Bioethical and human right issues were identified
and addressed in vast majority of situations. But the unprepared and overwhelmed systems
were coerced into making decisions on ethically debatable scenarios that violated
patients' human rights. The most important example was, waiting for ventilators or
oxygen supplements to be made available for the needy. Cancer patients in continuum
of care were harmed in these compromising scenarios.
Health professionals engaged globally through open dialogues and debates since the
disease was declared internationally. Along with other specialists, professional organizations
and researchers in oncology took part in those professional discourses and expert
consultations while addressing specialty-wise health concerns. Setting up telemedicine
services with inputs from treating centers proved helpful in addressing patient concerns
during these times.
Positive Outcomes
Ranganathan et al[21] pointed out some positive outcomes from the COVID-19 pandemic. This includes (1)
global realization of the need for a strong public health care system; (2) prioritization
of oncology treatments based on value and outcomes, both from a monetary and a patient-benefit
viewpoint, emphasizing the importance of value-based care[31]; (3) accessibility of cancer care closer to home that encourages a distributed model
of care; (4) adoption of digital platforms such as teleconsultations and video consultations
in health care systems, which increases the efficiency of cancer centers; and (5)
research demonstrated that large-scale practice-defining trials can be both pragmatic
and reliable, and modification of cancer trial protocols led to more efficient and
practical ways of doing clinical research, for example, follow-up evaluations nearer
to patients' homes and less frequent imaging in oncological services.[32]
[33]
What Is Next?
In many countries such as India, patients choose their cancer treatment center based
on the personal preference of a named consultant of repute, goodwill, specific skill,
or facilities available there. Travel restrictions during these times forced many
patients to seek treatment at a nearby facility due to logistical reasons. This trend
changed once free travel was possible. In future, telemedicine and video conferencing
may be practiced routinely for regular follow-up of distant patients. It is expected
that the cessation of different screening programs and reduction in diagnostic services
would lead to missed diagnosis, delayed diagnosis, and delay in treatment, which can
lead to overall increase in cancer mortality and public health burden in the next
5 years.[21] As Indian yogic teacher Sadhguruji said, “every uncertainty is a tremendous possibility. What needs to be fixed is not uncertainty,
but one's interiority to handle it.” The medical profession will come up with solutions for these anticipated challenges
that we face today, and the learned optimism and faith in our fraternity are the way
forward for our uncertain future.
Conclusion
Myriad ethical issues plague the oncologists in delivering their integrative clinical
services in the pandemic era. Certain issues that came to the forefront were unprecedented.
Problems like moral distress and looking on at inevitable grim endings need to be
actively countered by willful inclusion of proactive measures. Solidarity, dignified
respect, and concern for future generations and the environment are the way forward.
The indisputable faith invested in the health care systems should never be compromised,
and this will be facilitated by affirming to uphold the principles of UDBHR adopted
in 2003 at the UNESCO General Assembly, Paris. COVID has propelled the citizens of
the world into unprecedented uncertainty and suspended animation. Despite grappling
with the unknown disease entity of SARS COVID2, the health care community needs to
use and deliver. The HCW were the need of the hour and yet resisted due to the stigma
of infectiousness. The general public need to come to terms with battling the new
disease with unfamiliar tactics. The present illness pales in comparison with the
potential to be infected with an unknown disease. We further realize the scope and
applicability of UDBHR in those global medical emergencies from the bioethical and
human rights perspective.
