Medicine’s neglected half

The relevance of palliative care is growing. In Covid times, it can provide total care

The relevance of palliative care is growing thanks to the rise in non-communicable diseases and chronic lifelong conditions. The list of those who need palliative care is keeping pace with the increase in the average human life span. Earlier, it was primarily restricted to people with cancer. Now those with HIV/AIDS, neurodegenerative disorders (including forms of dementia), progressive neuromuscular diseases, metabolic disorders, terminal organ failures, cardiac or respiratory conditions, liver conditions, and others, are all included.

Palliative care today is therefore no longer just for terminal patients. There are people living with incurable health conditions, and palliative care can give them a good quality of life provided they use it early. Yet palliative care is not recognised as it should be, and access to it is restricted. This not only impacts a large population negatively but hurts the socially and economically disadvantaged the most.

According to the WHO, approximately 40 million people annually are in need of palliative care, of whom 78% live in low and middle income countries. Of the estimated 21 million children who have palliative care needs, almost 98% live in low and middle income countries. Add to this list a new fast emerging group of “long haulers”, those who will have to live with the long term side effects of SARS-CoV-2, and you have a veritable deluge of people who need effective symptom control and psychosocial and spiritual support, with little hope of getting it from existing health systems.

Making palliative care accessible to all those who need it is not an impossible dream. The obstacles that stand in its path can be easily overcome. They are a lack of awareness among policy makers, health professionals and the public about what palliative care is and the benefits it can offer if integrated into existing health systems, especially at the primary level.

We are also living in a cultural environment that would rather deny death, and view it as a medical failure, than accept it as a corollary of life. Another misconception is that improving access to opioids like oral morphine, so essential for meaningful pain control, will lead to increased substance abuse.

Looking forward, besides changing attitudes and altering misconceptions, national health policies and systems will have to reboot themselves to include palliative care as a vital component at all levels of health care. They will have to earmark funds to create new services as well as invest in services currently being operated, primarily by NGOs, who are doing a commendable job, but are limited in their reach and ability to raise funds.

Training in palliative care for all health care professionals, especially for health workers at the grass roots level, will have to receive priority along with access to essential medicines, like opioids for pain relief. Local communities must be mobilised for this effort.

The simple fact is that palliative care not only improves lives but also extends life. There are evidence based studies that verify this. Even if it is only a few extra days or weeks, these are precious additions for both patients and their family members. On the other hand, suffering has its limits and if not attended to early can take lives.

And I am not only referring to physical pain but to mental and spiritual pain as well. If we do not attend to this aspect, the mandate of WHO to promote total health wellbeing will go unmet. Psychiatrists tell us that they already see a rise in mental illness brought on by increased anxiety, fear of premature death and physical isolation. Moreover, dying today has become a health hazard for families as they are separated from their loved ones at this vital time, unable to say their final goodbyes in person or even to perform the final rites and post-bereavement rituals that provide solace.

The Covid-19 lockdown has brought on fresh challenges for those who are active in palliative care. Mahesh (name changed), a farmer from UP, was under treatment in a cancer hospital in Delhi. He, like almost 80% of those diagnosed with cancer in our country, had advanced disease. He had returned for his second cycle of chemotherapy. His plan was to have his treatment and leave as he could not afford to live in the city. When he arrived, he was surprised to find the hospital doors shut as it had been turned into a Covid-19 facility.

Another poignant real life tragedy. A distraught young man was pleading for help as his uncle lay dying on the hospital pavement. He wanted to see his loved ones back home before dying but the lockdown had begun and they had no money. Who could help him?

It was a palliative care NGO counsellor who responded to his plight and connected him with his family members through a video call. As the elder in the family, he talked to them, blessed them and said his final goodbyes. After his death, in accordance with his wishes, the last rites were performed, via a video call again, by a priest in his village.

“My care, my comfort” is the message of this year’s World Hospice & Palliative Care Day. I appeal to policy makers to make it a day of comfort for everyone in India by ensuring palliative care becomes an integral part of our health system so that it is accessible to all.

To read the article in TOI: Click here