I work as a pulmonary and critical care physician, which involves caring for critically ill patients in an Intensive Care Unit (ICU) and treating a diverse range of lung-related ailments in the outpatient setting. Hence, I often encounter patients at the crossroads of their life and death. In both inpatient and outpatient settings, I have witnessed a tremendous emotional and ethical toll of decisions surrounding medical care for those towards the end of their life.
"End-of-life care" refers to comprehensive medical and supportive care provided to patients nearing the end of their lives. It includes sub-entities such as palliative care, hospice care, and supportive care. Unclear end-of-life care strategies distress families, healthcare providers, and, most of all, patients themselves.
End-of-life care has garnered significant attention globally for a good reason. As populations age and the burden of chronic, non-communicable diseases increases, more people are living longer with multiple medical comorbidities which impact the quality of life. In developing countries like Nepal as well, average life expectancy is trending upwards. Modern Medicine has enabled us to extend life, but we often struggle with how to ensure that this extended life marred with chronic illnesses respects a patient's dignity, comfort, and the very purpose of living. According to a randomized controlled trial published in the New England Journal of Medicine (2020), in patients with widespread lung cancer, initiation of early palliative care led to improvements in mood, overall quality of life, and survival compared to those receiving standard care alone. This study, along with numerous other studies, contradicts a common misconception that choosing comfort measures over aggressive treatment means giving up. In reality, it can often mean living better and even longer with terminal illnesses.
In the seriously ill, conversations with patients and families regarding "code status" can be very challenging. "Code status" refers to what interventions a patient would want if they were to stop breathing or if their heart were to stop beating on its own. A "Full Code" designation means that the patient, regardless of their chances of recovery, will receive chest compressions, electric shocks to restart the heart, known as defibrillation, and placement on a mechanical ventilator. On the other hand, a "Do Not Attempt Resuscitation" (DNAR) or "Do Not Intubate" (DNI) designation indicates that the patient prefers to follow the natural course of life in the event of a terminal illness or condition. Medical disease treatment can be done, but the patient defers invasive procedures and artificial life support that may prolong life, often at significant physical and emotional cost.
Goals of medical care discussions in the end-of-life are often not easy. Families may wrongly perceive that choosing DNAR means abandoning their loved ones. They suffer from the effects of guilt, confusion, or fear of wrongdoing. As physicians, we understand from firsthand experience that sometimes aggressive medical interventions, particularly when they are unlikely to change the outcome, can be futile than fruitful for the patient. Patients and families may not be able to understand this. If there was no prior discussion about the goals of care, the family is unsure of how to reflect on the patient's choices when they are too sick to speak for themselves.
Lack of goals of care discussion in chronically ill patient leads to increased use of non-beneficial, aggressive treatments, fails to alleviate patient suffering, relieve emotional burden on the families, fails to respect patient autonomy, causes moral distress and legal vulnerabilities to the clinicians and decreases the chance for patient to die in the preferred setting. Besides, it also places a humongous financial strain on a country's healthcare system. In an article published in the Journal of the American Medical Association (JAMA), Zhang et al. reported that, on average, the cost difference for patients with an end-of-life care plan compared to those without was $1041. This extra cost was found to have added no medical benefit to the terminally ill patient and failed to provide a better quality of life. This cost difference in countries where Medicine is based on a pay-for-service model would be even more straining on patients and their families.
In developing nations, end-of-life care is not traditionally considered part of medical care. It remains an often-overlooked component of the healthcare model. In Nepal, as well, end-of-life care strategies are underrecognized and hence infrequently discussed. Although there are some pioneering institutions, such as Hospice Nepal and the Bhaktapur Cancer Hospital's palliative care wing, access is limited. Especially for patients and families residing outside the valley, access may be more challenging. For the vast majority in developing nations, death occurs either at home without medical support or in a hospital bed after days or weeks of treatment, failing to provide hopes of recovery.
Limited awareness and understanding of the notion of palliative care are major limiting factors in developing nations. Palliative care is often misperceived as "giving up" rather than enhancing quality of life in an appropriate clinical situation. Cultural values and religious beliefs also play a role. Death is seen as a spiritual journey, and discussions about instituting comfort-focused medical care are often taboo subjects. There is a distinct shortage of physicians, nurses, or allied health staff who are extensively trained in palliative Medicine. Most of the medical resources are allocated to communicable diseases, emergency care, and maternal and child health, as healthcare prioritizes these areas. Consequently, palliative care might be wrongly viewed as a secondary concern. Inadequate government national health policies, absence of budgetary provisions, bureaucratic hurdles and restrictions over medications for comfort care such as opioids, and weak infrastructure to create home or institution-based hospice services are a few limiting factors behind inadequate palliative care in developing nations.
First and foremost, there must be a widespread recognition that end-of-life care is a core component of healthcare. It should not be an afterthought. That realization will herald concrete changes. Healthcare providers and the general community should be educated about end-of-life care. Palliative care topic should be integrated into MBBS, nursing, and allied health syllabi. Training in care principles and communication, as well as incorporating goals of care discussions as a routine part of hospital admissions, is necessary.
There should be provision for workshops, continued medical education (CME), free or low-cost E-learning modules and mentorship programs to create linkages with the global palliative care diaspora. Mass media campaigns, community meetings that include local leaders, teachers, religious and spiritual gurus can humanize and boost public confidence in palliative care measures. National health policies should include palliative care services after weighing the cost-effectiveness and societal benefits of it. A collaborative effort between health, finance, and social welfare ministries would help form a robust joint planning. Balanced legal regulations can improve opioid and other symptom management access for patients. A subsidized care scheme or the inclusion of palliative care services in a health insurance scheme would increase accessibility and affordability. Establishment of home or institutional hospice care, formation of mobile palliative care teams, and provision of home-based care packages that include pain medications, hygiene supplies, and symptom charts would increase resources.
It is essential to engage the public. Patients and their families must be empowered to ask questions, and to make informed choices about what kind of death they or their loved ones would prefer. As physicians, we must be willing to initiate these conversations with honesty and compassion, not only when a crisis occurs, but early in the course of a serious illness, when choices are clearer and emotions less overwhelming.
As quoted by Isaac Asimov, "Life is pleasant. Death is peaceful. It's the transition that's troublesome". The process of dying should not be riddled with uncertainty, discomfort, or pain. Death should be a dignified departure. In Nepal and other developing countries, family values and faith are deeply rooted in their cultural foundation. Thus, we have an innate sense of compassionate end-of-life care. We now need a medical, institutional, and policy framework to match it. A paradigm shift does not come easily, but initiating the first action is crucial.
- Dr. Sharma is the Assistant Professor of Medicine, Baylor College of Medicine and Consultant Physician, Pulmonary and Critical Care, Baylor Scott and White, Texas
