“Whenever anyone mentions the word ‘cancer,’ it makes me feel uneasy. My children don’t even say the word in front of me,” said 73-year-old Chhabubai Kshirsagar from Govandi, Mumbai, wiping away her tears. Draped in a cotton nine-yard saree with a pallu over her head, Chhabubai once had long, waist-length hair. However, after undergoing chemotherapy for breast cancer, her hair started falling out and eventually, all of it was gone. This loss has left a deep emotional impact on her. “I’ve carefully preserved my lost hair,” Chhabubai said softly, gently running her hand over the short new hair that has begun to grow back.            

In the challenging journey of patients and their families dealing with serious illnesses like cancer, there is a need for someone who can offer comfort, provide support, guide them, and empower them to face the challenges ahead. This service is called palliative care.

According to the World Health Organization (WHO), palliative care is defined as:

“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.”

Chabbubai’s Struggle: A Journey Through Support and Care 

In October 2022, Chhabubai discovered a lump in her breast. Out of fear, she kept it a secret from her family for two months, until the lump began to cause pain. Her son, Mahadev, took her to the hospital. She was diagnosed and began chemotherapy at a Brihanmumbai Municipal Corporation (BMC) hospital in Mumbai. Initially, her condition remained stable, but eventually, her health deteriorated, and she lost a significant amount of weight.

With his wife Kalyani pregnant, Mahadev was under immense pressure. To make matters worse, he lost his job as a software engineer and took time to find another one.

During this period, Mahadev came across Palcare, an organisation offering palliative care for cancer patients at BMC Hospital. Mahadev recalls, “When needed, money can be arranged, but during such challenging times, what truly matters is proper guidance and emotional support. We found both through palliative care.”

After chemotherapy, Chhabubai faced several side effects, including difficulty with bowel movements, numbness in her hands and feet, vomiting, diarrhoea, and loss of taste. Kalyani says that the palliative care team was always there to offer guidance, “They taught us how to care for her, including managing her diet and handling symptoms at home. Even now, if we need help, we don’t hesitate to call, even late at night, and we always receive the support we need.” 

Read more: Lessons I learnt while dealing with my father’s cancer treatment

What palliative care entails

Dr Parag Afuwale, Physician at the Romila Palliative Care Centre (a public-private partnership between the Brihanmumbai Municipal Corporation (BMC) and SNEHA, an NGO in Bandra working in the areas of nutrition, education and health) says, “mental and emotional pain (often) causes greater distress than physical pain. Since these forms of pain are not visible, patients may struggle to express them..” In palliative care, a team comprising doctors, physiotherapists, occupational therapists, dieticians, nurses, counselors, treating oncologists, family physicians, and the patient’s family works collaboratively to develop a comprehensive care plan.

The focus is on addressing symptoms and side effects like pain, nausea, difficulty breathing, and wound care while providing support to patients and their families. It offers guidance on managing care at home, reducing the burden of frequent hospital visits and ensuring comfort in a familiar environment.

This can be done through both outpatient (OPD) and inpatient (IPD) services. For patients unable to visit the OPD, home care service is provided. A dedicated team of doctors, nurses and counselors visit the patient’s home to provide support, engage with the patient, and communicate with their family members.

Social organisations involved in palliative care support economically disadvantaged families by providing free essential medicines, diagnostic tests, and necessities such as diapers, commodes, and walkers. They also assist family members in securing employment or alternative means of livelihood and work to address social challenges, such as eliminating the stigma surrounding cancer.

A common misconception about palliative care is that it is only provided when all other treatments have failed, often seen as end-of-life care. However, palliative care should begin at the time of diagnosis and continue throughout the illness trajectory, including bereavement care. According to a study published in The Lancet, the early implementation of palliative care effectively improves treatment outcomes and enhances the quality of life. 

Another prevailing myth about palliative care is that it is only meant for cancer patients. In reality, palliative care is beneficial for anyone dealing with an illness that compromises their quality of life. This includes serious conditions such as congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney disease, Alzheimer’s, Parkinson’s, stroke, and more. According to the WHO, it is estimated that globally, only 14% of patients who need palliative care receive it.

Navigating crisis and difficult situations

Dr. Jayita Deodhar, head of the Palliative Medicine Department at Tata Memorial Hospital in Mumbai, explains, “Over 60% of patients visiting the hospital come from outside Mumbai. Many of them have numerous doubts and concerns regarding their illness and its treatment. However, doctors and the healthcare system often lack the time to address these in detail. In such situations, the palliative care team communicates with patients and their families, resolving their concerns.” 

“While treating doctors focus primarily on the disease, palliative care takes a holistic approach, providing support and care to the patient alongside managing the illness,” she adds.

After a cancer diagnosis, patients may sometimes withhold the information from their families, or families may choose to keep the details of the illness from the patient. Poruchisti Wadia, Assistant Project Director at Romila Palliative Care, explains that families often fear how to address the patient’s questions or are concerned that discussing the illness might cause distress. In such cases, involving the palliative care team can help facilitate these sensitive discussions. Palliative care emphasizes the importance of keeping the patient informed about their condition. 

Patients may also have personal wishes, aspirations, or expectations regarding their family or life. Understanding and fulfilling these desires can provide significant comfort and emotional relief, helping the patient find solace during their illness.

In one instance, a 60-year-old woman with advanced breast cancer was unaware of her diagnosis because her family had not told her. After counseling, the palliative care team helped the family inform her. Her first wish was to go on a pilgrimage. The palliative care team, along with her family, worked diligently to make it happen, managing her pain and symptoms until she was able to sit in a wheelchair. Eventually, she fulfilled her wish and completed the pilgrimage. 

Dr Parag observes, “Though she passed away months later, fulfilling her wish gave her family peace and created an emotional bond—this is the essential difference between palliative care and conventional medical treatment.”

Palliative care creates a supportive environment to help patients and their families navigate the challenges they face, offering reassurance that they are not alone, says Poruchisti Wadia. It helps patients spend their last moments peacefully at home with their family rather than facing death alone in the ICU. “Quality of life isn’t about prolonging days but enhancing life in each day, and that’s the essence of palliative care,” says Dr Parag.

The Economist Intelligence Unit’s Quality of Death Index 2015 report ranked 80 countries based on the availability and quality of palliative care. India was ranked 67th overall and 14th among the 21 low-income countries.

Meanwhile, Chhabubai’s health has now improved, and she has successfully overcome cancer. However, the emotional scars left by the illness still linger. Her son, Mahadev, said, “The illness often leaves my mother irritable and lost in thought. But whenever this team comes, she opens up, laughs freely, and that brings us a great sense of relief and happiness.”

Also read:

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• For patients’ families from rural Maharashtra, Dharamshalas in Mumbai offer a community of care
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