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When care, not cure, is the need of the hour

Palliative care is not just limited to the caring for the patient, rather it also focuses on well-being of the caregivers. The hesitancy to opt for palliative care is deeply rooted within the medical community and the public. It is one of the many challenges that this branch of medicine is facing.

"It is very rare for a person to be referred to palliative care by their attending physician. I know of people who have connected with me. Then when I direct them back to a palliative care team, it turns out that the palliative care team has been around in the hospital where they were being treated for three years. Their own doctors have not joined the dots," says Smriti Rana, Head-Strategic Programs and Partnerships at Pallium India. Trivandrum-based charitable trust, Pallium India, has been working towards integrating palliative care into the healthcare system in India since 2003.

The World Health Organisation (WHO) estimates that 40 million people across the globe require palliative care, out of which only 14 percent of the population have access to it. In India, it is estimated that only one percent of the 5.4 million people who require palliative care per year have access to it. Although palliative care was introduced in the mid-1980s in the country, there is a lack of trained professionals and palliative care centres.

Misconception about palliative care

WHO defines palliative care as "an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with a life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual."

Although palliative care is required for several health conditions, such as severe burns, organ failure, end-stage chronic illness, rheumatoid arthritis, dementia, Parkinson's disease and drug-resistant tuberculosis, among others. Historically, it was mainly associated with terminal cancer. Rana believes that "the definition [of palliative care] is changing and one of the reasons why people are reluctant to ask for palliative care is because in their minds it equates to giving up."

In 2012, the National Program for Palliative Care (NPPC) was started under the Ministry of Health and Family Welfare, Government of India. For the first time, in 2018, the Medical Council of India (MCI) decided to include palliative care in its undergraduate medical curriculum. According to Rana, this implies that "three generations of doctors do not know how to use opioids correctly. Even seasoned doctors have a very distorting understanding of what palliative care is." She attributes this scenario to the exclusion of knowledge about this branch of medicine in their curriculum and training. Thus, the medical fraternity is not comfortable around it.

Role of palliative care

Dr Ruparna Khurana, a Senior Resident of Palliative Medicine at All India Institute of Medical Sciences (AIIMS), New Delhi, believes that palliative care is not limited to end-of-life care, but it also plays an essential role from the time of diagnosis of a life-limiting ailment. Early integration of palliative care along with curative care ensures that the symptoms, medicine-induced side effects, and pain can be managed effectively throughout the treatment. She says that "it is a human right to be free of suffering, free of pain, and have a dignified death."

In most cases of end-stage terminal illness, physicians and nurses often convey the lack of available treatment as "I am sorry we cannot do anything more." In such scenarios, palliative care becomes the beacon of light for the patients and their caregivers. "We have to help them understand that sometimes there is no cure, but we will care for them. We will do the best we can because there is always something we can do, and there is always hope. But we need to give them realistic hope," says Hanife MacGamwell, a former clinical nurse specialist in palliative and hospice nursing with over four decades of experience in oncology nursing. She is currently a trainer at the various AIIMS centres.

Patient fallout is observed when the curative treatment fails. However, Dr Khurana observes that after being referred to palliative care, if the patients see an improvement in their quality of life, then they come for regular checkups.

Challenges in palliative care

Due to the fear of misuse of opioids, there were legal restrictions on its use through the Narcotics, Drugs, and Psychotropic Substances Amendment Act, 1985. The law was amended in 2014, and the usage of opioids was made available for clinical use by licensed practitioners. However, there is a lack of cognizance about the amendment. Pallium India organises multi-stakeholder opioid availability workshops to spread awareness.

Morphine is one of the most widely used drugs for pain relief and breathlessness. Yet, Rana observes that most doctors do not know the usage of the drugs. She says, "The doctor's or the family's immediate response is that morphine is an end-of-life drug, 'we are not there yet'."

According to MacGamwell, it is essential to include nurses in the interdisciplinary team when giving palliative care to a patient. "They need to be present, they need to be asked questions, they need to raise issues, they need to look for solutions and always advocate for the patients and their families." She acknowledges that there is less respect for the work nurses do, but she is hopeful that they can become an indispensable part of the system if they can build trust and communicate empathetically.

One at a time

The awareness of the importance of palliative care is still very low in India. Rana notes that most people who visit Pallium India know about its services through social media or from word-of-mouth from others. She describes their mixed emotions as "absolutely livid because it is the rage they feel because it was not an option all along that was not given to them. People have different reactions to it, but by and large, there is a sense of gratitude and relief that something can be done."

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