Posted by Dr M. R. Rajagopal, Thiruvananthapuram, Kerala
Health is defined by World Health Organization as “a state of complete physical, social and mental well-being and not merely the absence of disease or infirmity.” But do health systems really evaluate physical, social and mental well-being and try to provide it?
Our helpline got a call from a young man, an autorickshaw driver. Five years ago, this man’s kidneys had failed. He was put on twice a week dialysis, earning a livelihood the rest of the days. His wife too had health issues. With monetary help from a lot of people, two years back, he underwent kidney transplantation. His brother had donated a kidney. He got back to work and was re-building his life when the lockdown happened. Autorickshaws stopped plying, he had no work and no income. Every month, he needed medicines approximately worth Rs. 10,000. Without those medicines his body would reject kidney threatening his life and family’s happiness. We are funding his medicines until he begins to earn again.
Pallium India and palliative care
During lockdown, we at Pallium India found many people were deprived of their regular medicines who could not access the health care system for their asthma, heart and other ailments.
Pallium India’s mission is to work towards integration of palliative care with healthcare in India. Palliative care is prevention and management of serious health-related suffering (SHS). While today’s conventional medical system focuses only on the disease, palliative care is aimed at quality life of the patient and family. We provide outpatient services in our headquarters, in Government Medical College, Thiruvananthapuram and an inpatient facility for a few who badly need it. The mainstay of our service is home visits for those who are too ill or disabled to travel to an outpatient facility.
Palliative care and COVID-19
Palliative care becomes particularly relevant in the face of COVID-19, which amplifies suffering, concentrates a lifetime of suffering into a few days. The World Health Assembly on 20 May 2020, asked member countries to integrate palliative care into COVID-19 management; but this has not been done in India and Pallium India advocates for it.
When Kerala locked down on 23 March 2020, and the country the next day, we established a task force to evaluate barriers and ensure effective delivery of palliative care. We established telephone helplines. We made it clear that no healthcare delivery system can just shut down; that we have a duty to provide the best quality of care under any circumstances. All our patient care services – home visits, outpatient and inpatient care continued. In addition, we found that the lockdown had caused a lot of suffering. A large number of people were deprived of blood tests, essential medicines and sometimes basic requirements including food.
We asked for volunteers within the age group of 20-40 with their own vehicles. In two days, we got nearly 100 volunteers. We gave basic training to the selected volunteers, taught them to check blood pressure and blood sugar. They attended to such needs, delivered essential medicines and supplies where necessary. This demonstrated to us yet again the power of the community and how social capital can contribute to essential aspects of healthcare.
Just a test
Soon after the lockdown, we received a call from wife of a 72 year old man who had been discharged from a private hospital, after a stroke two weeks earlier. He was still not fully conscious, having abnormal sensations and some weakness in the body. He rang up his doctor with the hope that the doctor would see him in the hospital. But the doctor refused. Instead, he asked the old man to stay at home, get some blood tests done and then inform him. There was no way to get the blood test done because the accessible laboratories had stopped their services. He rang up the doctor who sounded irritated and said something like, “What can I do if you would not follow my instructions?”
We stepped in and got the blood tests done; but found that the man’s condition had deteriorated so much that he was dying. Our task was then in making sure that he was comfortable and in helping the wife to come to acceptance. However, the wife is living in guilt that she could not get him the medical attention that he deserved. These are trying times that seem to raise a frightening question- can health systems actually cause physical, social and mental suffering?
A retired nurse living in Delhi in her 60s with advance cancer (which had spread to her bones) found that her cancer hospital was no longer accessible to her. She was in severe pain and the family went from one cancer hospital to another, but all rejected her. She flew to her home town (Trivandrum) with her young daughter, while her husband had to stay back in Delhi. She was quarantined for the mandatory fourteen days in an institution. A volunteer from a non-government organisation in Delhi contacted us asking us whether we could help.
Over the phone, we got to know that she was suffering from cancer in her spine. She had intolerable back pain. Going through her records, we found that she needed morphine along with other medicines. We had them sent across to her. The next day she was crying; the quarantine home was furnished with a metal cot with no mattress. Having to lie on it was agony. We could not see the patient as she was quarantined. But we could send a mattress across. We are not sure what helped more; the morphine or the mattress?
But despite all that, her general condition worsened, and she was sent to the Government medical college hospital. Fortunately, we could connect her with a palliative care doctor in the medical college hospital and we could continue to provide her with the morphine that she required. We tried to get palliative radiation done for her spine, which would effectively treat her pain and also prevent a possible future paralysis; but she had to wait for a COVID-19 test result. A week later, the result had still not come; it had got lost. A second test proved negative and she was discharged.
We admitted her in our inpatient centre and are trying to arrange a radiotherapy consultation; we feel that would be the best way of giving her pain relief and also of preventing a future paralysis of her lower limbs.
We are aware that the experiences of health care delivery systems in any field of medicine often results in a greater magnitude of suffering than the disease itself. These experiences point out to us that health care systems need to look at health-related suffering (physical, social and mental) as one entity and not just the disease. The system focuses mostly on diagnosis (that too with less physical interaction than a quarter of a century back, with more of imaging and chemistry than ever before) to the almost complete exclusion of social and mental well-being.
These issues are of global relevance and have been there for decades; but COVID-19 and the lockdown bring them all into sharp focus for those who attempt to provide health care. Overall, at least so far, the negative impact on health seems to have been more because of the lockdown than due to COVID-19. Our experience in providing palliative care exemplifies this.
Dr Rajagopal is the Chairman of Pallium India. He gives leadership and direction to the organisation and also heads training and capacity building.
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