Dr. Rajesh Mahajan, Dr. Anju Jamwal
A young child was suffering with blood cancer, undergone all possible treatments, experienced intense bone pain and cried uncontrollably. As his condition worsened, and he became extremely breathless, medical professionals recommended admission to the intensive care unit (ICU). The mother clinged to her child, as if to shield him from being taken away, and sobbed in despair. Regrettably, the financially struggling family, overwhelmed by their circumstances, depleted their financial resources. The father tirelessly sought financial assistance and, in a last-ditch effort, mortgaged his home to cover the expenses of the ICU treatment. After 26 days in the ICU, the child passed away, leaving the family completely drained of financial means and emotionally shattered, with no place to call home.”
There was another elderly man who was financially well-off but became paralyzed after suffering a stroke, leaving him bedridden. He frequently experienced respiratory and urinary tract infections, leading to multiple admissions to a corporate hospital. He expressed to his family that he does not wish to undergo aggressive treatments like intubation or admission to the ICU, as he does not believe such measures would improve his quality of life. However, during his latest visit to the emergency department, doctors recommended ventilator support. Despite the patient’s reluctance, his family insisted on ICU admission, and he was placed on a ventilator with the addition of feeding, urinary, and intravenous tubes. Unfortunately, he ultimately passed away after enduring 56 days of aggressive treatment while on ventilator support, isolated and in discomfort.
Are these narratives coming across as exaggerations? We want to emphasize that they are, without a doubt, genuine real-life stories. Such narratives are frequently encountered in the Indian context, exacerbating the suffering experienced by patients and their loved ones. Despite the presence of some of the world’s top-notch hospitals, healthcare services remain inaccessible to the majority of the population. The futile attempts to prolong life without enhancing its quality not only intensify the patient’s anguish in their final moments but also result in them passing away in isolation, far from their families, often in intensive care units with frequent hospital visits. This situation places significant strain on both financial resources and emotional well-being. A report in the British Medical Journal has highlighted that millions of individuals in India are driven into poverty each year due to healthcare expenses. Unfortunately, India ranks among the 12 worst countries in terms of the economic and financial devastation caused by healthcare costs.
Many of us tend to avoid contemplating and conversing about distressing topics such as suffering and mortality. The majority of individuals express a desire for an abrupt and tranquil passing, an ideal that, in reality, remains elusive. Research indicates that merely 10 percent of individuals experience a natural death. For the remainder of the population, the trajectory of life leading to death is marked by uncertainty and unpredictability. It’s imperative that we contemplate these matters because suffering and death can unexpectedly intrude into anyone’s life at any moment. Therefore, we must gather the courage to engage in proactive discussions about these issues and explore means to address them.
WHO defines palliative care as a care which improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual. So the quality of life of caregivers improves as well. This aligns effectively with the World Health Organization’s (WHO) definition of health, which states that health is not merely the absence of disease or infirmity but rather a state of complete physical, mental, and social well-being. Given that palliative care encompasses all these facets of health, it becomes evident that achieving genuine health is contingent upon firmly integrating the principles of palliative care into the medical profession.
To prevent suffering for patients and their families and ensure the proper allocation of available resources, movement in the field of palliative care movement began in the 1960’s when medical care of the dying was seen as de-humanised and only focused on cure rather than care. Although it arrived somewhat later, it also made significant progress in India when the southern state of Kerala actively implemented palliative care even upto the the grassroots level of local panchayats. As the 21st century began, there was growing recognition and demand for palliative care among both the medical community and governments. In 2012, India’s Ministry of Health established the National Programme for Palliative Care (NPPC) and revised the restrictive narcotics act to simplify the procurement of morphine and other opioids for pain relief in cancer patients, making it more accessible for medical institutions. This move greatly boosted the palliative care program, with its reach extending to every corner of the nation including the union territory of Jammu and Kashmir.
Palliative care is an affordable specialized field that has the potential to significantly decrease excessive healthcare expenses. It focuses on addressing pain and various physical symptoms that often accompany cancer and other life-limiting diseases. When properly organized and executed, it can achieve these goals at significantly reduced costs. Furthermore, it helps in conserving valuable hospital and ICU resources, ensuring they are available for critical life-saving situations.
Regrettably, most of these changes face significant barriers in our country, characterized by slow progression and challenges stemming from social, cultural, and legal factors. Firstly, there is a lack of awareness among both healthcare professionals and patients, resulting in inadequate referrals to palliative care by primary care physicians, and a limited number of individuals seeking such care. Additionally, there is a prevalent misconception that palliative care implies the absence of treatment or marks the end of life, which is not accurate. In reality, palliative care should be integrated from the early stages of a disease to facilitate symptom management. Furthermore, there are misconceptions, such as the belief that opting for palliative care means discontinuing medical treatment, or equating it with alternative forms of therapy. Another deeply ingrained misunderstanding is that palliative care is exclusively for cancer patients when, in fact, it can benefit a wide range of chronic and life-limiting conditions, including congenital diseases, neurological disorders, kidney and liver and heart diseases, and infectious diseases like late stage Tuberculosis and tuberculosis infections. Palliative care encompasses all age groups and can be administered in various settings, including homes, hospitals, personal care homes, or hospices.
World Hospice and Palliative Care Day serves as a worldwide occasion for collective action, dedicated to commemorating and bolstering hospice and palliative care. Its inception dates back to 2005, and since then, it has evolved into one of the paramount global events in the realm of palliative care. Annually, a distinctive theme is selected to underscore a pivotal facet of palliative care.
This year, as we commemorate World Hospice and Palliative Care Day, we aim to underscore the significant link between two significant movements: the hospice and palliative care movement and the compassionate community’s movement. Hence forth the theme fot this year for World Hospice & Palliative Care Day 2023 is Compassionate Communities: Together for Palliative Care.
The Government Medical College Jammu, a pioneer tertiary care institute, has taken the lead in introducing palliative care services. These services are available through the outpatient department daily and also a state-of-the-art 8-bedded palliative care ward has been established. As indoor facility, the indoor ward is equipped to admit patients who require comprehensive pain management, addressing their physical, emotional, spiritual, and financial needs. We have well equipped pain clinic at the institute where various interventions are carried out for pain management. We encourage the community to utilize these palliative and supportive care services provided by Government Medical College Jammu free of charge under Ayushmaan Bharat Scheme. A helpline number (9070250150) is available for the patients 24*7.
Our approach of care for these patients is deeply rooted in compassion and empathy, and it respects the cultural and social norms of our patients. GMC, Jammu’s palliative care services aim to establish profound bonds of trust and dignity that go beyond clinical environments by establishing meaningful connections with patients through humaneness and respect. Our goal is not only to provide a peaceful and pain-free quality of life for patients in their final stages but also to ensure they experience a serene and comfortable transition at the end of their lives.
(The authors are from Deptt. of Anesthesia, ICU, Pain, and Palliative Care Govt Medical College, Jammu)
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