For home-based palliative care

It ensures that the patient remains in a familiar environment, even during the pandemic.

January 10, 2021 12:21 am | Updated May 26, 2021 07:41 am IST

The COVID-19 pandemic has changed many of our habits and ways of thinking in all walks of life. So has it changed medical care and the facilities offered. Globally, in the context of the pandemic, demand for ICU beds surpassed the capacity. The persisting reluctance among the public to go to hospital due to the fear of contracting the dreaded infection has resulted in reduced hospital admissions. The restrictions enforced with regard to the number of people who can stay with a patient also pose difficulties in hospital admissions.

As every other specialty, palliative care have been affected by the pandemic. Geriatric patients presenting with organ (heart, lung, kidney and liver) failure require hospital admission. Yet, with the aforementioned limitations, hospital admission may still not be feasible. Here comes the importance of home-based palliative care. It ensures that the patient remains in a familiar environment, which is much less stressful and reduces the risk of exposure to SARS-CoV-2. Availability of quality care at home reduces the extra financial burden on the family. Unlike cancer care, which gets financial assistance from government schemes, patients with non-cancer diseases are mostly supported by the family.

In Kerala, the palliative care system has been reasonably established under the government healthcare set-up. The palliative care teams from the primary health centres (PHCs), comprising mostly nurses and paramedics, visit the patients at home and provide them medications and healthcare advice and do minor procedures such as urethral catheterisation. A doctor pays a visit whenever required, in addition to the regular monthly visit.

Extending the scope

Incentivising palliative care has helped in the promotion of this service. Despite the functioning of designated care teams, palliative care in India mostly focuses on terminally ill cancer patients. Palliative care should be provided to all patients with a debilitating disease which restricts their functionality, social involvement, earning capacity and most important, their self-accord. By the World Health Organization’s definition, palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through prevention and relief of suffering, by early identification and impeccable assessment and treatment of pain and problems physical, psychosocial and spiritual. Thus, all patients with debilitating illnesses, such as end-stage renal and liver diseases, heart failure, advanced lung disease and a multitude of other diagnoses stand to benefit from palliative care.

Patients with advanced non-cancer diseases form a group slightly different from those with advanced cancer. Unlike cancer patients who have a more or less predictable prognosis, these patients’ disease progression is not so. They show a waxing-and-waning disease pattern, which makes it difficult to diagnose the terminal worsening and predict death. The symptoms worsen over the years, with frequent exacerbations requiring hospital admissions, eventually ending up in a seemingly unexpected death. We are yet to develop guidelines on when to switch to terminal care in these patients.

The difficulty in predicting death in this subset of patients makes timely provision of end-of-life care quite challenging. Another prohibiting factor is that most of the medical super-specialty training programmes do not give emphasis to palliative care. The patients’ awareness of the disease is much less compared with those with cancer. This often prevents them from planning their end-of-life care and priorities in advance. This lack of awareness also acts as a barrier in priming the families to the inevitable progression of disease.

Medical and paramedical training at all levels should consider incorporating the principles of palliative care in management of patients with non-cancer diseases. The primary physician, in the presence of the family, should initiate a discussion on home-based palliative care as one of the treatment options. A home-based care, under the guidance and support of the family physician who may take appropriate specialist consultations as deemed necessary, will be an effective alternative to the traditional approach. This has been validated by experiences from the developed world. Adequate legislation enabling the same in our society will put this cause on a front footing. We will all be the losers if home-based palliative care is overlooked.

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