Healthcare, as we know it today, has not always been like this, and neither will it remain so – not for the worse, but for the better – and as healthcare advances, so does the quality of human life. It is due to healthcare advancements that diseases that once ravaged the world, from malaria to smallpox, tuberculosis, polio, and more recently, COVID-19, are now more or less overlooked. That blood transfusion, organ transplantation, and gene editing are now possible. That global maternal and under-five mortality rates are declining, while diagnostic accuracy and speed are improving. At the forefront of healthcare advancements today are artificial intelligence, precision medicine, and personalized medicine. The pace, without a doubt, is rapid. Yet, amidst these transformative advancements, one facet has remained invaluable but grossly misunderstood and underappreciated.
Palliative care is an interdisciplinary medical care-giving approach aimed at optimizing quality of life and mitigating or reducing suffering among people with serious, complex, and often terminal illnesses (Zhukovsky, 2019).
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO, 2003).
Examples of life-threatening diseases include cardiovascular diseases, chronic respiratory diseases, cancers, liver failure, kidney failure, HIV/AIDs, sickle cell anemia, diabetes, stroke, rheumatoid arthritis, Parkinson’s disease, dementia, etc.
One thing is clear from the two definitions above: palliative care isn’t refusal to care, but, in fact, a form of care. Palliative care is not intended to cure the disease; instead, it manages associated symptoms, such as pain, breathlessness, immobility, inability to feed orally, and psychosocial distress. That a disease is life-threatening does not mean it cannot be cured and that a disease is incurable does not mean the quality of life until death should be miserable; therefore, palliative care is not only provided in instances of incurable diseases, but for any life-threatening illness: this means that palliative care can be provided concurrently with curative care. Palliative care is not age-specific; it is only commonly associated with the ageing population because the prevalence of many terminal illnesses increases with age. It should not also be confused with end-of-life/hospice care because while the latter is a form of palliative care provided during the final weeks or months of life when death is imminent, the former is all-encompassing and may span several years. Palliative is not euthanasia; the latter is a deliberate act by a physician to end a patient’s life (a legal process in some countries), the former continues to provide care, however advanced the illness, to relieve suffering and sustain life for as long as possible. Unlike curative care focused primarily on treating the underlying disease, palliative care holistically addresses the physical, psychological, social, and spiritual needs of patients and their families. Even after the patient has died, palliative care continues to provide bereavement and grief support for the family, loved ones, and primary caregivers. Clearly, it is no less demanding than curative care.
The concept of palliative care can be traced back to the Latin term “pallium,” meaning a protective cloak, and the original notion of “hospice,” which is not derived from hospital but was a term used by medieval pilgrims to mean “a resting place for weary travelers.” When healthcare advancements led to people dying more in hospitals than homes in the nineteenth century, a gap in terminal care emerged. Patients with incurable or terminal illnesses were literally abandoned. In 1842, however, Madame Jeanne Garneier, driven by her own experience as a widow and bereaved mother, created L’Association des Dames du Calvaire in France, leading to the first use of the term “hospice” as a home for dying people. Jeanne’s model was later adopted by the Irish Sisters of Charity in Dublin and London. By the 1950s, a growing awareness of the abandonment of the dying triggered research studies, all of which underscored the pressing need for dedicated care for patients with terminal or life-threatening illnesses.
In 1967, Dame Cicely Saunders, who had a multidisciplinary background as a nurse, social worker, and physician, pioneered the concept of “total pain,” which addresses physical, psychological, and spiritual suffering. This philosophy led to her founding of St. Christopher’s Hospice in London in 1967. In 1969, Swiss-American Psychiatrist Elisabeth Kübler-Ross published her seminal work “On Death and Dying”. In 1974, Canadian Surgeon Balfour Mount coined the term “palliative care.” Elizabeth raised awareness about palliative care in the United States. After decades of advocacy, palliative care achieved recognition as a medical sub-specialty in 1987. Subsequently, the World Health Organization (WHO) published a palliative care guideline in 1990, promoting its integration into healthcare systems globally. If the birth of modern palliative care is agreed to have coincided with the establishment of St. Christopher’s Hospice in 1967, then palliative care will be 59 years today.
To say palliative care has greatly transformed healthcare is to merely state the obvious. But we must first acknowledge the fact that some diseases are currently incurable and life-threatening and cause immense suffering. It is inhumane to abandon anyone suffering from such diseases. Besides euthanasia not being everyone’s choice, it is illegal in most countries. The core of palliative care, therefore, is to preserve human dignity by optimizing or improving the quality of life of patients with terminal or life-threatening illnesses, and there are millions of people living with cancers, cardiovascular diseases, stroke, diabetes, kidney failure, dementia, and more. According to the WHO, an estimated 56.8 million people, including 25.7 million in the last year of life, are in need of palliative care every year; yet, only about 14% currently receive it, with low- and middle-income countries bearing the greatest burden of unmet need. In Nigeria, where only about 0.2% of palliative care needs are met, persistent systemic challenges and abysmally low awareness continue to impede progress.
Perhaps nothing both illustrates and propagates the lack of awareness about palliative care in Nigeria better than two recently trending videos on social media. First, it is disheartening to see revered personalities lose their lives to these diseases that are largely incurable in their end-stages. Second, it is sad to see the weaponisation of ignorance in villainizing health care workers. Note that this is not to downplay the situation or appear unempathetic, but to debunk a widespread misconception, especially as the videos have attracted views in the millions, sparking intense debates about palliative care. In the separate videos, Lima and Kira, the two daughters of the late Nollywood actor Taiwo Hassan, popularly known as Ogogo, appealed to the public to help treat their father, who had recently been diagnosed with stage-four cancer. Apparently, the medical team managing their father had, after unsuccessful chemotherapy, recommended palliative care. But this was miscommunicated by Lima, who said, “…the hospitals are refusing to treat him. At least, please, give this man a chance. Nobody wants to do anything.” Kira, without disclosing the plan of the medical team, said, “Hospital is saying that they can’t treat him again, like they can’t give him chemo again.” Aside from the fact that these statements trivialise the essence of palliative care, they also build public distrust in healthcare. In medicine, further management options are explored based on the patient’s responsiveness to previously-explored plans, amongst cost of maintenance and other peculiarities. Kira’s statement, on the other hand, tells only a part of the whole story. The public must understand that stage four cancer – the highest stage of cancer – is a kind that is highly life-threatening because it has spread to multiple organs. When chemotherapy and other interventions fail, palliative care is recommended, as attempting to continue curative care may pose even greater harm to the patient. And this is the place of palliative care that is not understood by many, even within the healthcare space.
Another major concern about the videos is the perception of healthcare providers as villains rather than allies – or just professionals that are doing their job. This is particularly disturbing because trust and confidentiality is the backbone of patient-doctor relationship and the foundation of medical ethics. Also, the digitization of sharing medical knowledge and the increasing interaction between healthcare professionals and the general public has created a perception that people can argue about the science and art of medicine so far they can always search things up on Google and AI chatbots. When the public distrust healthcare systems and professionals, they inevitably turn to any other source that claims to provide solutions. This was clearly demonstrated in Lima and Kira’s videos. Lima had said, “If you know somebody that knows somebody that will be willing to treat him, anything, we’re willing to try anything.” Kira was even more candid, saying “If you can treat my daddy…whether it’s medical or herbs… ìbílẹ̀ way or medical way, you can send me a DM or my sister.” (ìbílẹ̀ is the Yoruba word for traditional medicine.) Lima’s use of the word “willing” reinforces the claim that hospitals were “refusing” to treat, while her statement that “we’re willing to try anything”, as well as Kira’s statement that “whether it’s medical or herbs”, signal distrust in healthcare. No medical team, in the true sense of the term, would advise patients to “try anything”, not even traditional medicine, as many lack scientific evidence of safety and efficacy. Healthcare providers are allies, not villains. Even Dame Cicely, who pioneered palliative care, was a healthcare provider herself, and she acted with goodwill.
However, we are not oblivious to a part of the tragic story that points to the inefficiencies in the system that cares for human life. Reports were that the late actor had been presenting to hospitals with recurrence of symptoms. In retrospect, symptoms persisted partly due to the fact that he was managed for something else from an early misdiagnosis. It is not unusual to find that this is the case with many deaths that have been recorded in many countries with relatively less developed healthcare systems. Proper review of cases and follow ups must be done to ensure that a patient is receiving the appropriate care that holistically caters for their wellbeing.
The goal of healthcare is to alleviate human suffering as much as possible by preventing and treating diseases, including palliative care for incurable or life-threatening illnesses. With the help of vaccines, many diseases that were previously regarded as deadly are under effective control. In fact, smallpox has been eradicated since 1980, polio cases have declined by 99% since 1988, and over 150 million lives have been saved by vaccines in the past five decades. Diagnostics, curative treatment, and palliative care have also advanced. Nevertheless, life-threatening illnesses are better prevented than treated, and the earlier the diagnosis, the better the prognosis. We must embrace preventive measures such as eating a healthy diet, exercising regularly, avoiding tobacco and alcohol, taking vaccines, and having regular medical check-ups. (Regular medical check-ups are particularly important to prevent signs and symptoms from devolving into end-stage diseases). Palliative care and hospice care exist because of the ever dynamic demands of crucial fields like medicine. The need for optimal living even while managing end-stage diseases is the reason patients are duly advised to explore these end-of-life care. It is relieving for a patient to live through their last days without being in constant pain and a generalized uncomfortable state. While it’s quite difficult to make the relative or primary caregiver of a patient understand and accept the inevitable outcome of end-stage diseases, it’s very important not to misconstrue management options as incapability to cure. Until all existing diseases get a definite cure, regardless of the staging, palliative care still matters to millions. Palliative care is not refusal to care; it is humanity’s daring move to keep living in dignity, no matter the odds.
