How integrating palliative care improves the quality of life for patients and their loved ones
There is nothing more humane than relieving the pain of another person — whether the cause of adversity is a major organ failure, motor neuron disease, cancer, tuberculosis, acute trauma, or even the fallibility of old age.
Palliative care serves that purpose. The multidisciplinary approach caters to the needs of all patients suffering from serious illnesses.
According to a report published by the Indian Council of Medical Research, an estimated 2.25 million Indians are suffering from cancer, and around 50,000 individuals are diagnosed with a brain tumour every year. The increasing trend is true for other critical health conditions too.
Thus, palliative care helps patients in managing symptoms while elevating their quality of life. Moreover, it also helps the patient’s family to deal with the tribulation.
However, access to palliative care is as low as two to three percent in India, owing to the lack of research, awareness, infrastructure, and resources.
Rumana Hamied, the Managing Trustee of Cipla Foundation, speaks to SocialStory about the need for palliative care and some of the key challenges in administering it. Rumana has been leading the CSR efforts of Cipla through country-wide partnerships and innovative interventions, especially in the areas of palliative and respiratory care. She also serves on the board of the Cipla Palliative Care and Training Centre, Pune, and is presently working to scale palliative care programmes.
SocialStory [SS]: What exactly does palliative care entail? What is the level of awareness that exists about it in India?
Rumana Hamied [RH]: Palliative care consists of a slew of components that offers support to patients with serious ailments — from pain management, diet and nutrition advice, physiotherapy and counselling services, etc. It is administered along with curative treatments, not only for patients but also for their caregivers and loved ones.
For example, if a child is diagnosed with cancer, his family members, particularly the parents, tend to break down and go through an emotional rollercoaster. Palliative care helps them during this difficult time through the provision of accurate information about treatment, as well as the road to recovery. Additionally, it mentally prepares the family for the journey lying ahead.
India is not familiar with palliative care. This is true for both the general public and the healthcare industry. Since hardly a few patients know about it, they do not ask for it.
SS: What is the kind of care that is required for patients suffering from serious illnesses?
RH: People who are detected with chronic diseases generally experience fear, despair, and loss of independence. Going through multiple tests, treatments, and surgeries can be an aching process. Moreover, the patient’s family members and caregivers may find it stressful to provide for and support them.
This is where palliative care can help. It personalises care plans to suit the physical and emotional needs of patients so they can understand and cope with the trajectory of the ailment. It also eases the burden on the family by handholding them at every step of the way.
SS: Can you throw some light on the major challenges faced by hospitals and healthcare units in integrating palliative care in their treatment process?
RH: At present, India is facing a shortage of qualified doctors. According to the Economic Survey released in 2019-20, the doctor-patient population ratio in the country is 1:1456, compared to the WHO recommended 1:1000.
Due to this, most of the practising doctors and medical staff have a huge caseload. It becomes challenging for them to provide holistic care given the high demand for their services. Besides, there is still a lack of awareness among them about palliative care and its significance.
SS: How can the healthcare system prepare itself for it?
RH: Hospitals must have a comprehensive strategy in place to integrate palliative care in their services. In order to administer it successfully, multiple efforts need to come together from doctors, nurses and hospital administrators. Since palliative care is a specialisation in itself, putting in place rigorous training sessions, covering all the elements of symptom management such as nutrition, medication, counselling, etc., is important.
These training sessions can be either virtual or offline. In fact, including case-based learning modules in the curriculum will also lead to a better understanding of palliative care and knowledge acquisition.
SS: How has COVID-19 changed the way people look at palliative care?
RH: The Indian healthcare sector is under tremendous stress due to the coronavirus pandemic. Many hospitals are investing in additional manpower, equipment, and infrastructure to set up isolation wards and take care of those affected with COVID-19. This, in turn, is causing a sharp decline in OPD footfalls, surgeries, and other non-COVID-19 treatments. In fact, a lot of individuals are jittery about getting themselves diagnosed or admitted in a hospital due to the fear of catching the virus.
At present, it would not be wrong to say that coronavirus is taking precedence over other ailments. This, however, does not mean that they can be ignored. Hence, providing palliative care from the comfort of the patients’ home is an alternative that can work very well.
SS: Can you talk about the positive impact palliative care has had on patients’ lives?
RH: When a 70-year-old lady by the name Sarita Devi was diagnosed with breast cancer, she refused to get treatment due to her innate fear of undergoing surgery, as well as her financial constraints. With her cancer at an advanced stage, and Sarita constantly reeling in pain, the homecare team of Cipla Palliative Care & Training Centre, Pune, counselled her and her family members to go ahead with the surgery.
After the surgery was successful, the team supported her to cope with all the wounds and soreness. The physiotherapist taught her the right exercises and applied sequential pneumatic compressions to manage the lymphedema (excess fluid in the tissues causing swelling).
For the last four years, she was being administered with palliative care. Today, Sarita is enjoying a good quality of life with her family.
SS: What can the government do to bridge the gaps in the palliative care space?
RH: Integrating palliative care in the Indian healthcare system is a necessity. There is a lot that the Indian government can do in this regard.
In 2017, palliative care found a mention in the National Health Policy for the first time, subsequently which a manual was released, highlighting it to be an integral part of primary healthcare. However, there was limited budgetary allocation towards its implementation.
Hence, the government needs to translate things mentioned in the manual into action. A few other measures that the government can take are organising awareness campaigns about palliative care, ensuring the availability of medicines and opioids for pain management, and including palliative care as a subject in the MBBS curriculum.
Edited by Suman Singh