Maha El Akoum
The essence of palliative medicine is the alleviation of suffering through the provision of compassionate, holistic care to a terminal patient. It is a form of care that is distinguished by the emphasis it places on viewing the patient as whole person; a unique individual. It is an original permutation of thoughts, preferences, morals, views and spiritual or religious beliefs.
Now, in the face of the COVID-19 pandemic, what has changed about how we provide palliative care and what can we learn moving forward?
My interest in the ethical provision of palliative care stems from my involvement in the WISH report on Palliative Care and Islamic Ethics that was launched at the WISH 2018 summit. WISH then collaborated with Georgetown University in Qatar and the Vatican’s Pontifical Academy for Life (PAL), to host a symposium on ‘Muslim and Christian Perspectives on Palliative Care’ in January 2019 in Qatar. This symposium was attended by senior religious authorities and religious scholars from the Muslim and Christian Faiths, and concluded with the signing of a joint declaration on end-of-life and palliative care that promoted an integral approach to the person - the humanization of palliative care.
WISH’s commitment to this cause was reinstated last December when, in collaboration with PAL and the British Medical Journal, it hosted a two-day summit in Rome on religion and medical ethics that focused on the roles religion and spirituality play in providing holistic care within the context of medical ethics. Speakers from the Muslim, Christian and Judaism faith discussed their perspectives and the various interfaith approaches to promoting the role of spirituality in palliative care. As expected, it became apparent that, across all religions, ethical concerns are the same. Additionally, all religions agreed that it is vital to provide compassionate care that takes into consideration spiritual needs alongside medical or clinical needs, and all participants raised the issue of ever-tightening budgets that result in the negligence of the field as a whole.
So, what does the emergence of COVID-19 mean for palliative care? The harsh reality is that palliative care services tend to be under-resourced and undervalued even during the best of times. Factor in a global pandemic, and we see how healthcare systems around the world are buckling under the crushing pressures of the exponential rise of COVID-19 cases.
The current state of global emergency has injured the very core and soul of palliative care. For a start, decision-makers now have to make a choice on who receives critical care and who does not. When Intensive Care Units are overwhelmed, do we allocate hospital beds and machines to those who are most likely to survive, or those who have a poor prognosis regardless of medical intervention?
Terminal patients in countries with the strongest of healthcare systems who were once provided with high-quality, personalized palliative care are now reduced to the readings on the machines they’re attached to and the scribbles in their charts. One can only imagine the case of lower income countries with fragile health systems to begin with. Suddenly this one whole human, this life, this myriad of thoughts, ideas and beliefs, becomes a mathematical equation - a calculation of risk and probability. Consequently, end-of-life care is threatened with the curse of dehumanization.
To add insult to injury, this global pandemic means that frontline healthcare staff are not only overworked but mandated to be distant from their patients at a time when human contact is not only critical but necessary. Even when they are at a person’s bedside, layers of protective medical gear - suits, gloves, masks, face shields, goggles - make it difficult to communicate, reassure, console, or even simply listen. Arguably, the main demographic of palliative care patients (those aged 65 years and above with chronic illnesses) are also those at higher risk of contracting and dying from COVID-19, so protective equipment and lack of social interaction is vital. Under normal circumstances, families would be the ones to provide the needed social support in lieu of this shortcoming. However, this pandemic has reshaped what we know to be normal.
Palliative care is patient-centered care, but also family-centered care. Family members are an essential pillar in palliative care service provision. Healthcare providers often work closely with family members to provide support that goes beyond the traditional frameworks of medical services, and most terminally-ill patients will express the need to spend their remaining time surrounded by family. Where patients are deemed mentally unfit, doctors turn to family members for important decisions over medical care plans.
COVID-19 makes this near-impossible. Families are being forced into social isolation from their palliated loved ones. They are no longer allowed to be in the same vicinity, never mind touch or console them. That means most will die alone.
While the World Health Organization has recently issued guidance on maintaining some of the most essential healthcare services during the COVID-19 pandemic, this unfortunately came with no mention of palliative care.
One resounding common theme between all religions when discussing palliative care practices is the importance of preserving patient dignity. Dignity is widely accepted as a universal need that is integral to the wellbeing of an individual, and, more specifically in this case, the patient. The key attributes of dignity are autonomy, respect, empowerment and communication. It is therefore important that we do not lose sight of these elements during these testing times.
In fact, COVID-19 provides an unprecedented opportunity for medical practice to learn from the field of palliative care about how to treat patients in a way that is the complete sum of physical, emotional, and spiritual needs, as the alleviation of suffering in all its forms is an essential part of the global response to the pandemic
As the death toll rises, and resources are stretched thinner and thinner, we need to remember that communication, empathy, and listening to patients’ needs remain essential practices. If compromised, these can result in medical errors, missed treatment opportunities, and compromised patient safety - further contributing to the crisis.
Spiritual needs also need to be addressed and honored. For example, in the case of a Muslim patient, these requests could be as simple as facing Makkah at the time of death or having the Qur’an recited to them. Such small fixes could go a long way to improving wellbeing through preserving dignity.
Lastly, we must not forget about sons and daughters, siblings, and parents who have been separated from their dying loved ones, often with no means of communication and no follow-up on disease prognosis and progression, and the patients facing death without so much as a hand to hold or the chance to say goodbye to their nearest and dearest. Several health systems have found a way around this by utilizing video conferencing platforms and allowing their patients to communicate with family members through technological means. Perhaps equally as important is the communication between healthcare providers and patients’ families, which must not be compromised at this time.
WISH has worked with the BMJ’s Journal of Medical Ethics to create a paper that acts as a postscript to the Vatican event we hosted with PAL in 2019. Reflections on Autonomy and Authority discusses the tensions between the autonomy of an individual and the authority of the social group, whether it is a family, profession, or religion. The two notions are very relevant when considering the complex ethical and legal issues around making decisions for others, such as those requiring palliative care.
The paper makes the argument for broader conceptions of dignity, personhood, and authority, and to locate a person in the context of their families, societies, culture, and religious traditions. It is a vision that emphasizes context and social embedding, where a broader conception of what it is to be a person holds greater strength. Crucially, the paper notes that this vision of “relational autonomy” can help resolve clashes because any decision taken by a doctor or healthcare worker on behalf of a dying patient will always be in the context of relationships, especially with those closest to the person. While there may be areas of tension between religious traditions and ‘secular’ medical ethics, religions bring a depth of understanding in terms of compassion, solidarity, dignity and community.
Starting with small practical steps, it is my hope that we can reverse the trend of dehumanization and – as part of our whole systems response to the COVID-19 pandemic – renew global efforts to humanize palliative care.
Maha El Akoum, Head of Content and Research Fellow at the World Innovation Summit for Health (WISH) – Qatar Foundation’s global health initiative – on how palliative care has been “injured” by the pandemic, but still holds lessons for compassionate medical practice.
