At the request of the World Health Organization (WHO), CBEC organized a two-day workshop to review the “WHO tool for benchmarking ethics oversight of health-related research with human participants.” The document is developed to assess the capacity of ethics governance structures at the institutional and national levels. The aim of the workshop was to determine the feasibility, relevance and validity of this document to the realities of LMICs.

Dr. Palitha Mahipala, WHO Representative (WR) for Pakistan, gave the opening address. Dr. Andreas Reis from WHO Geneva Office joined online to introduce the purpose of the tool. Dr. Ahmed Mandil, WHO-EMR Office, provided regional perspectives via Zoom. Dr. Arshad Altaf from the EMRO in Egypt participated in person for discussion.

Twenty-one participants, with diverse experiences in ethics governance, representing all four provinces of Pakistan, participated. Dr. Obaidullah representing Drug Regulatory Authority of Pakistan (DRAP), and Dr. Saima Pervaiz Iqbal chairing Research Ethics Committee of the National Bioethics Committee (NBC-REC), focused on ground realities drawing from their experience of membership in their respective committees.

After reviewing and critiquing the document, participants provided several suggestions. They recommended removal of a clause mandating use of online registries for governance structures at the institutional level due to its impracticality in local context. Another suggestion was that all research proposals should be reviewed irrespective of methodology given the nascent culture of research in many LMICs.

The workshop concluded with a report incorporating participant feedback, which was submitted to WHO Geneva. In a subsequent email, Dr. Reis thanked CBEC and acknowledged that the Pakistani participants “went into great details” providing “entirely new, and excellent suggestions” that will help making the tool “more feasible and practical.”

The need for clinical ethics in guiding healthcare professionals in their decision-making processes is heightened in complex fields such as surgical oncology. Life-threatening diseases like cancer not only impairs quality of life of patients as they are exposed to multiple treatment regimens, but they encounter uncertainty in their daily lives as they navigate the healthcare terrain. Physicians have a crucial role to play in these situations. Drawing from my experience dealing with complex cancers whilst working in Pakistan and United Kingdom, I seek to illustrate the similarities and differences between the healthcare systems of the two countries highlighting ethical challenges heightened in this field.

How does one make informed consent from patients truly ‘informed’ in the Pakistani context where family continues to remain at the center of decision-making? Families often request physicians to not tell patients about their diagnosis and treatment believing that they are in the best position to decide for the patient. Some may also argue that they do so in order to protect the patient’s emotional well-being. This contradicts respecting patient autonomy, a fundamental principle of modern medical ethics. In the UK, patients have better access to resources and information therefore the discussion remains patient-centric, resulting in shared decision-making. Differences in culture and level of education have an impact on the process of informed consent. Therefore, the onus lies with the physician to tailor their approaches to best suit patients’ requirements so that they remain the center of care.

In Pakistan, physicians struggle with providing healthcare. In low and middle income countries, resource constraints pose additional burdens on physicians. Certain cancers require specialized surgical equipment, and specific expertise, beyond the reach of majority of the population due to high costs. Limited resources along with a huge patient load necessitates fair and transparent processes for equitable access to care. Physicians also have to contend with the moral burnout experienced that can result from making these life-altering decisions for their patients.

The risk of moral distress also increases when physicians have nothing to offer but comfort care to patients who can no longer benefit from any treatment. What should physicians offer to patients who have exhausted all treatment options? While the UK has made significant progress in integrating palliative care into the healthcare system, Pakistan is lagging far behind. Surgical oncologists over here do not have the luxury of relying upon a specialized palliative care service. They have to initiate and sustain these difficult conversations with terminal patients themselves.

The practice of surgical oncology requires an additional sensitivity since it creates ethical challenges unique to it, shaped inevitably by existing cultural and socioeconomic pressures. A special commitment and extra care is required to ensure better decision-making for patients, to preserve their dignity and ultimately minimize their suffering.

Through passion, my disposition discovered the flavors of life
I found pain with remedies and sufferings with none.
Ghalib (translation by the editor)

I work at a public hospital in Pakistan that provides all medical services, including organ transplantation, free of charge, made possible through government funding and private donations. The hospital serves a large number of underprivileged individuals from all across the country.  Limited resources of most families adds to the responsibilities of the liver transplant team. These include carefully weighing the benefits of transplanting the patient, and potential risks to the donor along with the repercussions for large, interdependent families.

Transplant surgeons and coordinators must often delve deep into personal matters of the donor and recipient and their family leading to long-term relationships that begin well before the actual transplant takes place. We inquire about the size of their homes and living arrangements, the number of family members, income levels of breadwinners, quality of their water supply, and access to sufficient food. We understand that our technological success is dependent at least as much on their socioeconomic milieu as it is on the biological fitness of donor and recipient. Patients often draw us into their lives, akin to “elders” of the family, for matters extending beyond their physical maladies. And some of these stories remain indelible in my mind.

For young Talha, our hospital became a refuge from a broken family. A year after his mother generously donated her liver for his transplant, his parents divorced amid a bitter dispute. His mother remarried and moved away. His father, who had custody, had to leave for long trips for his job as a truck driver. Talha mostly lived with his Chacha’s (paternal uncle) family, facing hardships from his uncle’s wife, who treated him like a servant. Whenever he felt overwhelmed, he would come to the hospital, as he knew we would admit him for a “workup” for his symptoms. This way he could stay in the hospital until his father returned and took him home.

After his father died in a tragic truck accident, Talha’s visits grew infrequent, until one day, gravely ill, he was brought once more to the hospital. He was severely dehydrated and in shock, reportedly suffering from diarrhea for a few days. We suspected he had been ill much longer. Despite our efforts, we were unable to save Talha. The technological success of the complex medical process was eclipsed by the social vagaries that had befallen this troubled young man.

Sana, a young teenager pleaded to us, “Doctor sahib, can you please tell my father to pay attention to us too, not just his new wife.”  She had received a liver transplant from her older brother a couple of years ago. She expressed frustration that her father, who had separated from her mother and remarried a younger woman, had neglected her and their household needs. We were surprised since we had known him to be a caring and involved father. This request left us a little overwhelmed due to the weight of expectations placed on us.  My colleague and I nodded as we left the clinic’s cubicle. We made attempts to contact the father but received no response. Her request however seemed natural to us. After all we had allowed the family to make us a part of their lives over the years.

These stories of real people in the real world are glimpses into our everyday experiences as transplant surgeons. For me, the couplet by Ghalib, the most celebrated Urdu poet of all times, offers a reflection of our pursuit in alleviating the suffering of our patients and their families. We don’t always succeed, but the essence is in the effort. That makes it worth it, every time.

As a palliative care physician practicing in Pakistan, my journey has been an intricate dance between the principles of palliative medicine and the cultural fabric of our society. Providing end-of-life care in a family-centered, religious society such as Pakistan necessitates navigating unique challenges, ethical quandaries, and respecting indigenous cultural norms. In this reflection, I share my experiences and shed light on the ethical questions that often arise, emphasizing the importance of cultural sensitivity in palliative care practice and the provision of end-of-life care.

In Pakistan, the concept of family extends far beyond the nuclear unit, encompassing extended relatives and close friends. It is not uncommon for several generations to reside under one roof fostering a strong sense of communal responsibility towards the elderly and terminally ill.  Family ties are deeply ingrained in our social structure, and end-of-life care is predominantly centered within the family unit. Cultural norms dictate that immediate relatives assume the primary responsibility for caregiving, especially in the face of a terminal illness. Families actively participate in decision-making, often providing the primary source of emotional, physical, and spiritual support. However, this can present challenges for healthcare professionals, as differing opinions and conflicts within families can complicate the delivery of palliative care.

Religion plays an integral role in our society, and Islamic teachings greatly influence how end-of-life care is approached, both by healthcare providers as well as patients and their family members. Islamic teachings emphasize compassion, mercy, and the value of preserving life. Patients and family members often seek solace and guidance from religious and spiritual leaders during this challenging phase of their lives. Incorporating spiritual support into palliative care becomes essential, respecting individual and familial beliefs while fostering an environment of empathy and understanding.

A key ethical dilemma that one encounters is balancing the autonomy of the patient with the strong influence of family in decision-making. While Western bioethics emphasizes individual autonomy, in our society, familial consensus and collective autonomy of the familial unit often takes precedence. Striking a delicate balance between respecting patient wishes and honouring cultural values requires open communication, patient education, and family involvement in the decision-making processes.

Very often, cultural and religious beliefs impact the administration of necessary analgesia and pain relief especially at the end of life. In our society, there is a prevailing fear of addiction associated with opioid use, which can lead to reluctance in administering adequate pain relief. Misconceptions surrounding the use of opioids for pain management commonly leads to unnecessary suffering for patients. Overcoming this barrier is challenging and time-intensive; inordinate amounts of time is spent counseling and educating patients, families, and healthcare professionals about the importance of effective pain control and dispelling myths associated with opioids.

Disclosure of bad news, such as a terminal diagnosis, is another complex ethical issue influenced by cultural norms in Pakistan. We, as a society, tend to value hope and discourage frank discussions about prognosis. There is a prevalent belief that shielding patients from distressing news will preserve their hope and maintain their quality of life. This cultural norm raises ethical questions regarding the autonomy of the patient and the duty to provide accurate information. I have encountered situations where patients and families requested withholding the diagnosis entirely, preferring a “need-to-know” approach. In such cases, it is best to address these requests by acknowledging their cultural perspective, while gently advocating for a balanced approach that respects the patient’s autonomy and the need for informed decision-making. The real challenge lies in balancing honesty with compassion, taking into account the individual’s values, beliefs, cultural background and emotional well-being. Sensitivity and gradual disclosure, while involving the patient’s support network, helps to navigate this delicate situation.

Effectively addressing these ethical quandaries often requires a multifaceted approach. First and foremost, building trust and establishing a strong rapport with patients and their families is crucial. Engaging in active listening, normalization, validation of thoughts/feelings/emotions, cultural humility, and respecting diverse perspectives can foster open dialogue. Collaboration with spiritual and religious leaders as well as community influencers can also aid in dispelling misconceptions and bridging the gap between traditional beliefs and palliative care practices.

Furthermore, integrating cultural competence training within healthcare education is imperative. By equipping healthcare professionals with a nuanced understanding of cultural norms, beliefs, and values, we can foster a more inclusive approach to palliative care, ensuring that patients’ needs are met holistically.

Ambiguity in clinical communication carries both risks and benefits.¹ It can cause anxiety and confusion or it can provide a source of expanded understanding and new ideas. While scientists usually seek certainty, clarity and the elimination of divergent shades of meaning, in clinical communication what is often required is the deliberate preservation of uncertainty, and in these cases ambiguity is the means by which this is generally achieved.

When, in the clinic, the diagnosis or likely outcome is unclear, when what happens next is, or we want it to remain, uncertain, we call on ambiguity. We use ambiguity when we want to keep open future possibilities, however remote. We make use of ambiguity when we try to understand someone who operates within a different system of beliefs or values. In these cases, we draw for new possibilities on the location and mobilisation of the gaps in language, of the spaces in which meaning is not fixed, in which words gesture toward things, ideas, emotions and experiences.²

We turn to ambiguity when we ourselves are struggling to understand, when we wish to give voice to novel or difficult ideas: for example, when we are engaging in complex discussions of an ethical or philosophical nature, such as when we are trying to discern the goals of treatment or to clarify an emotional response. In these cases, ambiguity is a rich resource, a powerful motor of meaning creation. By allowing us to move within the shadow world at the boundaries of sense it enables us to fashion ideas and thoughts that have never before been articulated. It is here a weapon for conquering new territory, for driving beyond the limits imposed by conventional experience to the silent territory just outside what has hitherto been said.

When I face someone whose choices do not completely make sense to me – for example, a man with a treatable condition who refuses treatment, a woman who continues to smoke despite life threatening lung disease, the son of a man about to die who demands to keep going, no matter what the cost – I seek a way to break through the curtain of unintelligibility. To achieve this, I need to suspend my own system, my own presuppositions and standards of truth and validity. I need to make contact on a different level, to listen in a different vein: I have to try to imagine what he or she is getting at. As the patient talks I try out images and possible meanings to see if they work. I construct in my mind a system of categories of functional principles or qualities instead of causal interactions between hard organs. The task is to find common ground, a place where we can share sense.

Somewhat like talking in poetry, I open myself to a suggestiveness and an allusiveness.³ In almost all cases, against the odds, despite the differences in background assumptions, philosophical dispositions and expressive styles, I am able to gain a sense of his or her experience and to piece together an understanding of the broader clinical context, and the uncertainties, fears and hopes that underlie it.

The ability to deploy ambiguity is part of the everyday competence of clinical medicine. In the complex settings that there arise many modalities of communication come into play, including the utilisation of the sources of ambiguity at the edge of propositional speech: those devices, rhetorical forms, figures and tropes generally eschewed by philosophers and scientists but embraced by poets and creative writers.⁴ There is in speech itself a peculiar relationship that is generated from inside it, not as part of a formal, logical deduction involving an interlocutor but with a singularity located outside the explicit subject of the exchange, a singularity that is not thematised by the speech is indirectly approached by it. Therefore, speech is not a solitary or impersonal exercise of a thought or a process of mediation among contested propositions: it is a shared adventure of creation and discovery.

Boundaries and limitations always remain. There is no exact or complete transmission of information unchanged between systems of meaning. However, there is in all communication a common making sense, a mutually enriching contact, an enhanced respect and understanding. The meaning that is produced, that actually emerges from the process of dialogue between discrepant discourses, is different from the pre-existing meanings embedded within each of them. This process is therefore not one of pure translation but of the actual generation of new meanings within the specific syntactical, semantic and pragmatic contexts of the distinct discursive unities.

The conversations that occur in the clinic involve careful listening and the careful fashioning of ideas, arguments and suggestions. Often the objective is not to achieve certainty but to avoid it. In this endeavour ambiguity is a powerful and fecund resource, at least when wielded with skill and care. It provides a way to resolve differences in sense, to maintain flexibility and openness in our expressions, to preserve hope and to construct new pathways forward. It is the means by which we enter into communication where the possibilities for doing so are most remote.

References:

1. A fuller version of this article can be found in: Komesaroff PA. “Uses and misuses of ambiguity”. Internal Medicine Journal 2005; 35: 632–633
2. Empson W. Seven Types of Ambiguity. UK: Pelican; 1965.
3. Deleuze G. Clinical Essays. Minneapolis: University of Minnesota Press; 1997.
4. Levinas E. Philosophical Essays. The Hague: Martinus-Nijhoff; 1990.

In this brief reflection on the nature and purpose of Clinical Ethics Consultation (CEC), I propose that we think of the ethics consultation process as analogous to ‘moral midwifery.’ However, before explaining why I chose this particular analogy for explaining my understanding and approach to ethics consultation, I want to emphasize that this is only ‘one way’ of thinking about CEC. I emphasize this because if there is consensus on anything when it comes to understanding the nature and purpose of CEC, it is that there is no consensus on this subject.

The origins of what was to become the current practice of CEC in North America can be traced to the early 1960s in Seattle, Washington. In the early days of kidney dialysis demand far exceeded the extremely limited supply of dialysis units available. In order to deal with the ethically fraught questions regarding who would or would not receive dialysis, Seattle’s Swedish Hospital organized a committee consisting of both lay and professional members to review individual cases. Labelled the ‘God committee,’ this body literally determined who would live and who would die.¹

Dialysis was only one of many high tech interventions making their way into mainstream medicine in the 1960s and 70s. Such technological marvels increased the power of medicine to extend the lifespan, but also presented the ethical challenge of ‘unnatural selection;’ where once we could only provide care and comfort while nature took its course, we now had the power to curtail and in some cases even reverse the natural course of disease. Governments and healthcare authorities began looking to the field of ethics for guidance. Hence the emergence of modern bioethics and with it CEC.²

However, as more hospitals and health authorities established ethics committees and ethics consultation services, questions arose about how to evaluate the effectiveness of the consultation process. The theme of a conference held in Chicago in 1995 was ostensibly the ‘Evaluation of Ethics Case Consultation,’ but the organizers acknowledged the difficulty of evaluating efficacy when there was no consensus on what the goals of CEC were in the first place.³

There are complex reasons for requesting a CEC including issues of resource allocation, differences of opinion amongst the clinical team, or tensions between clinicians and patients and/or their families about an appropriate course of treatment. The challenge of specifying clear goals for CEC is exacerbated by the diverse backgrounds of those involved in performing this service. While some clinical ethics consultants are medically trained, others are not. There is also wide variation among models for providing CEC and the practice of ethics consultants within these models. Institutions may conduct CECs through a hospital ethics committee or a formal ethics consultation service, while others rely on a single ‘ethics consultant’ to provide guidance.

Ambiguities about what it means to be a clinical ethics consultant and how to assess effectiveness have persisted. In 2022, BMC Medical Ethics published an extensive scoping review of reported outcomes for CEC.⁴ The review concluded that CEC suffered from a lack of standardization that was hindering “the provision of high quality intervention and CEC scientific progress.” It seems not much has changed since the Chicago conference a quarter of a century earlier.

The scoping review closes with a quotation from Aristotle’s Nicomachean Ethics. Aristotle states: “Our discussion will be adequate if it has as much clearness as the subject matter admits of, for precision is not to be sought for alike in all discussions . . .” Aristotle understood that we should not expect to quantify and measure outcomes in ethics in the same way that we measure scientific progress. Medicine is both art and science. Much in the realm of ethics is about the art of medicine; it deals with matters of the heart as well as the intellect. The modern penchant, while understandable, for ‘evidence based medicine’ comes up short when attempting to categorize, quantify and measure CEC. The authors of the scoping review acknowledge Aristotle’s wisdom but seem reluctant to apply it to their own study.

This brings me to my characterization of CEC as analogous to ‘moral midwifery.’ While I have worked as a clinical ethics consultant for over three decades, early on I struggled with these very issues. How would I measure whether or not I was making a difference? Modern medicine has become a system of highly specialized fields, and it is common practice to rely on specialist consultants. Although I lacked formal medical training, I had extensive post-graduate training in philosophical and applied ethics. Did I want to be seen as the ‘ethics expert’ who advised on all things ethical? While my ethics training provided certain tools for assisting in sorting through the complexities of various ethical conundrums, I resisted being characterized as the ‘moral expert.’

Socrates struggled with similar issues when approached to advice on various matters. He resisted being viewed as the expert, claiming (somewhat improbably) that he really did not know anything. He insisted that those who sought him out already knew the answers to the questions that perplexed them; his role was to act as a ‘midwife’ to assist in delivering the wisdom already residing within them.

References:

1. http://www.nephjc.com/news/godpanel
2. Bell, J.A.H., Salis, M., Tong, E. et al. (2022) Clinical ethics consultation: a scoping review of reported outcomes. BMC Medical Ethics. 23,99: 1-65.
3. Fletcher, J.C., Siegler, M. (1996) What are the goals of ethics consultation? A consensus statement. Journal of Clinical Ethics 7,2: 122-6.
4. Jonsen, A.R. (1998) The Birth of Bioethics. New York: Oxford U Press.

Contemporary bioethics places a great deal of emphasis on the patient’s autonomy, important aspects of which include complete disclosure about the disease, and the patient’s right to make informed decisions about therapy. However, the extent of information imparted to patients may differ in various cultures. With the objective of exploring the influence of local culture on the disclosure of illness and subsequent decision-making, I conducted an empirical study in a Karachi hospital on women diagnosed with breast cancer. My study included detailed interviews with twenty four patients as well as with the female surgeon involved in their care.

One of the most interesting findings that emerged from my study was the use of language by patients and doctors. Patients I interviewed generally avoided the word “cancer” and, if the word came up during discussion, from using it as ‘first person’ statements. Therefore they would say that “the disease was cancer” instead of “I have cancer.” The terms commonly used instead of “cancer” included bimaari (illness), rasoli (a generic word for a mass) or yeh cheez (this thing), while some patients called it a khatarnak bimaari (dangerous illness). Two patients disclosed that family members also avoided using the word cancer. One respondent expressed her annoyance at being called a “cancer patient” by junior doctors, something she said “senior” doctors did not do. In her opinion, though this word may be routine for doctors, it magnified the stress and fear of the patient. She narrated that when the oncologist asked her outright if she knew what her disease was and told her that she had cancer, she burst into tears.

Others believed that the disclosure of cancer could kill the patient. In one case where the patient could not speak Urdu, her daughter (who was acting as interpreter) told me that she used the word rasoli (tumor) to refer to the cancer, and had informed her mother that “a small operation” was required. Following surgery, when the mother realized that her breast had been removed, the daughter told her that it was done to prevent the rasoli from spreading. When I enquired if this was not deception the daughter replied, “This disease is life-threatening. But the disease does not kill a person as quickly as telling someone that your death is on its way.”

Hufeland (1762-1836) said that “to prophesy death is to cause it.” My study suggests that as the word cancer was interpreted as imminent death by some using euphemisms like illness or tumor may serve as a mechanism to distance the disease from death. The consulting surgeon I interviewed confirmed the taboos surrounding the word cancer, and said that the word she too routinely uses to patients is rasoli (tumor). In her experience with patients she said, “once the word cancer is used the [patient’s] mind goes numb.” She said that somewhere during multiple visits the word cancer may be mentioned, but not always.

My interviews revealed that avoiding the word cancer does not imply that patients were ignorant of the diagnosis. A patient told me, “Nobody said the word but I just knew.” It seemed to me that although patients understood the malignant nature of their disease, it was considered emotionally and psychologically important to use words that “softened”   the impact of the diagnosis and perhaps maintained a sense of hope. Interestingly, my study has led me to reflect on my own use of language as a surgeon, and a realization that I too often avoid the word cancer when speaking with my patients.

The development of best practices and guidelines by international organizations, societies, and consortiums often takes place in what appear to be Utopian contexts, ignoring resource constraints and stewardship challenges inherent to LMICs. The management of infectious diseases in a low-resource setting requires an acknowledgment of multiple social, economic and cultural realities and the unique ethical challenges they pose.

In our upcoming CBEC Forum, three speakers will discuss ethical challenges related to antibiotic stewardship and equitable global distribution of COVID-19 vaccines within the context of Pakistan and LMICs. They will hope to bring into the local context what may otherwise appear as a pipe dream.

Dr. Asma Nasim is an Infectious Diseases specialist at SIUT and is a member of the European Ethics Advisory Committee (EEAC) of the European Society of Clinical Microbiology and Infectious Diseases (ESCMID) since 2021. She is a PGD alumnus of CBEC.

Dr. Sunil Dodani is an Infectious Diseases specialist at SIUT.

Dr. Natasha Anwar is a Molecular Biologist at Aga Khan Hospital Lab in Lahore. She is also a CBEC Associate Faculty and an alumnus of the PGD and Masters programs.

This session will be conducted in a hybrid format with a limited number of physical seats at CBEC. Those interested in attending the session in person are requested to register by emailing cbec.siut@gmail.com before March 15, 2023.

To register for online participation, please click the Zoom registration link below:

Zoom link: https://us02web.zoom.us/meeting/register/tZYod-6gqTgtE9NNi-tQnczFV1WEWdmXOyW4

This session will also be live-streamed on our Facebook page.

CBEC welcomes incoming students to its Master in Bioethics (Class of 2024) and Postgraduate Diploma in Biomedical Ethics (Class of 2023) programs. The “Foundation Module” is scheduled on campus from January 9 to 21, 2023.

MBE, Class of 2024

PGD, Class of 2023

Dr. Farhat Moazam, CBEC’s Chairperson, received the Hastings Center Bioethics Founders’ Award for 2022. The award is conferred annually on individuals from across the world in recognition of substantial and sustained contributions to bioethics. Dr. Moazam was cited for her “remarkable range of accomplishments as a pediatric surgeon and an educator, ethicist, ethnographic researcher and institution builder.” The other recipient for the year was Anita L. Allen, Professor of Law and Philosophy at the University of Pennsylvania. Previous recipients of the award have included Henry Beecher, James F. Childress, Tom Beauchamp and Renee’ Fox among others. Dr. Moazam is the first woman from Asia to receive the award.

To mark the occasion, a dinner was organized by Dr. Adib Rizvi, Director of SIUT, CBEC faculty, and Dr. Moazam’s erstwhile residents and students in surgery and bioethics, several of whom are now working in leadership positions in different institutions in Pakistan. Colleagues from across the world sent Dr. Moazam congratulatory video messages, and those present reminisced about their long association with her as their teacher. The event ended with a dinner on the terrace outside CBEC on a balmy Karachi evening.