Beyond the physical pain, palliative care is crucial in providing psycho-social support to the patient and their families.
An integrated approach of merging palliative care with the cancer patients’ clinical treatment from the diagnostic stage itself results in an accelerated response to treatment, say the doctor of the Radio Therapy department at Post Graduate Institute of Medical Education and Research (PGIMER). “Though we are yet to analyse the complete data set, our broad experience has proved that cancer patients respond well to clinical treatment, when accompanied with palliative care,” says Dr Bhavana Rai, an Assistant Professor at PGIMER’s Radiotherapy department.
The department, which has received recognition from the American Society of Clinical Oncology (ASCO) for the quality of palliative care it provides to cancer patients, has treated a total of 8,024 cancer patients in 2018- a number which will only rise over the years.
“In India, more than 80 per cent of cancer patients get diagnosed only at a later stage of the disease, and are most definitely in need of palliative care,” says Dr Feroza Patel, a Radiation Oncologist, who has retired from PGIMER and is working with the Indian Red Cross Society to run a palliative care hospice in Chandigarh’s Sector 43, dedicated to treating cancer patients.
Palliative care refers to a form of treatment that focuses on improving the quality of life of patients and families suffering from a chronic or terminal illness. Aspects of palliative care include pain management, counselling and stress management. “The idea behind palliative care, especially in India, is to turn away from regular forms of treatment, wherein doctors focus on the disease and not on the person suffering from it. In palliative care, not only do we look at the holistic welfare of the patient, but we also look at the family of the patient as the unit that needs our care and counselling,” says Dr Patel.
In India, the extent of palliative care offered to patients with terminal disease is still limited. A report written by Dr Rajagopal, a Padma Shri award winner known for his pioneering work in palliative medicine in India, says that less than one per cent of India’s population has access to palliative care, despite a huge number of people suffering from terminal illness in the country.
“Apart from that, not many places in India offer a degree in Palliative Medicine. There are a few medical schools and colleges that offer an MD in palliative care, but it is still not seen as a lucrative career option, despite it being such a promising field in improving the treatment we provide to the seriously ill patients,” says Dr Bhavana Rai.
Integrated treatment for cancer patients
“Conventionally, palliative care was seen as the last resort treatment, but over the years, most doctors of the Radiotherapy department at PGIMER have begun referring their patients to the palliative care doctors at the OPD, right after they are diagnosed with the disease,” says Dr Bhavana.
The doctor, whose expertise is in gynecological cancer, has to deal with her patients with utmost sensitivity, as the stigma around reproductive cancers often creates hurdles in accessing quality treatment. “Women neglect their reproductive health for a long time, let the cancer grow and come here at a later stage. We had a patient, recently, who survived cervical cancer but is now incapable of producing children. She became so despondent that she contemplated to commit suicide, and we had to work with the palliative care professionals closely to get her out of that state of mind and continue the treatment,” adds Dr Bhavana.
At PGIMER, a palliative care doctor from the Indian Red Cross Society is posted at the Radio Therapy OPD, so that patients receive clinical treatment and supportive palliative care simultaneously. Dr Mini Arora, who also works at the hospice for palliative care run by the Indian Red Cross Society, sits in the OPD at PGIMER. “I am here to provide support and treatment to all those who come to the OPD. I also visit the hospice in the evening to provide treatment to those who are admitted there,” says Dr Arora.
“The idea is to make sure that none of our patients feel abandoned, or feel like they are being passed on from one party to another,” says Dr Patel.
According to her, at most places in India, palliative care is usually provided by social workers, NGOs and volunteers, and do not work in collaboration with the doctors providing clinical treatment for cancer. “Here, due to the integrated approach, the patients do not feel like they have been abandoned by their doctors, because the same face that they see at PGIMER, they also see at the hospice or at the home visits we conduct,” adds Dr Patel. Home visits are also an essential part of palliative care, where people get the support and treatment they require at home when they are in too much pain or otherwise incapacitated to regularly commute to the hospital.
Pain Management
Another crucial aspect of palliative care is pain management, since most patients dealing with terminal or last stages of cancerous growth in their body are often in unceasing physical as well as emotional pain.
The use of morphine for pain management began in India after an amendment was made in the Narcotic Drugs and Psychotropic Act in 2014, allowing opioids to be prescribed by doctors for pain relief. “Now, even when some patients are beyond curative treatment, we can provide symptomatic treatment through these pain killers. But doctors have to be trained well to know the exact amount of pain killers to be prescribed to these patient for pain management, to make sure that the patients are not dependent on the drug, once they no longer need it,” explains Dr Rai.
Beyond the physical pain, palliative care is crucial in providing psycho-social support to the patient and their families in order to lessen the emotional pain and mental stress borne by them. Dr Rai says that she personally counsels her patients when she feels like they require that intervention, and refers patients to psychiatrists when necessary.
Dr Arora, the palliative care doctor, also regularly counsel patients and their families and refer patients from the hospice to psychiatrists at PGIMER. “Cancer patients at a later stage of their illness face a lot of stress not only because of their own suffering, but because they fear that they will not be able to fulfill the responsibilities they are supposed to when it comes to their families,” adds Dr Arora. The paliative care providers do not only provide emotional and mental support to patients, but also financial aid to those who are economically underprivileged and need money to carry out domestic duties, such as educating their children or paying for their marriage. The Hospice
Shivani Dhingra, whose father died of cancer, says she is forever grateful for the treatment she received by the Indian Red Cross Society volunteers at the hospice. “My father’s cancer was detected at a later stage, and when we took him to PGIMER, he refused to get chemotherapy because he was aware that he was beyond getting cured.
We were referred by the hospital to the hospice, and that made the last moments of my father’s life so much more bearable,” says Dhingra.
“They never lied to me or gave me or my family false hope, but they stood by our side and held our hand through it all, giving us the strength to go through the challenging time,” adds Dhingra, who now feels such a strong connection with the hospice that she volunteers there, and has created a green space and maintained a vegetable garden for the patients.
Established in 2003, the hospice has a capacity for 15 patients, including two private rooms. “All the rooms are now air conditioned, financed by donations, and the private rooms can be availed by the patients at a cost of Rs 300 per day. This cost includes everything including all meals,” says Dr Patel.
Apart from two doctors, the hospice has five staff nurses, four attendants, four cleaners and two cooks dedicated to the treatment of the patients admitted to the hospital. The general wards are provided free of cost to the patients, who mostly come from economically underprivileged background.
A nurse at the hospice, Shalu says that the pain and eventual passing of the patients admitted at the hospice, takes a toll on her as well. “Often, we go and cry quietly in a corner and then go on with our work. It does take an emotional toll on you, but we have to be strong for the patients and their families,” she says.
In a brightly painted ward shared by two patients- a young girl of fourteen and an aged man- Shalu and Dr Arora interact with the patients with familiar ease, laughing and joking with the 14-year-old girl battling cancer. “You like to play cards? Tonight you can play cards with the nurse then!” says Dr Arora to the girl.
Outside the ward, the doctor discloses that the girl is suicidal, and has claimed at times that she will take her life if she is not administered a pain relieving injection immediately. The girl also wishes that her mother was around, who allegedly has no money to pay for the travel to the hospice.
“This is the level of suffering in the lives of these patients, and it breaks our heart, specially to see young lives suffer. But we are here to make sure that these people are provided humane medical intervention, one that looks at them as a suffering human being, and not just a dying patient,” concludes Dr Arora.