Palliative Care in COVID Times – Quality of Death Matters!!

BACKGROUND

More than a year of the COVID-19 pandemic has made the world realise the value of resources like ICU beds. The dreaded disease has also led to millions of deaths where the patients died in a manner they never wanted to, many families not even getting the opportunity to mourn the death of their dear ones. Not to mention the psychological impact, it had on the general public as well as on the healthcare workers. This has led to increased stress and fatigue among those involved, which leaves us with a lot to ponder about the priorities in medical care, especially from the point of view of the cared. Improvement in healthcare has enhanced life expectancy globally, which translates to an increasing percentage of elderly population. The physiological reserve of every organ system declines with each passing decade. This has, in turn, led to increased number of people living with organ failure. The number of such patients is higher than the number of patients with advanced malignancies.^[1,2] The cost of managing these patients is weighing heavily on the national exchequer which means that resource utilisation should be with discretion, giving emphasis to the priorities of patients and their families. Home-based palliative care is an effective approach in this direction providing care at home while ensuring comfort of the ailing and support for their kin. Provision of home care offloads resource like ICU beds, ensuring their better utilisation. This is more relevant in lower income countries which constitute the large proportion of adults requiring endof-life care.^[3] Triaging of patients is indispensible whenever there is a scarcity of resources. Poor resource management, leading to the saturation of ICU beds, can compromise critical care of more deserving patients.

Data regarding ICU bed strength from the developed world reveal that the UK lags behind other comparable economies such as Germany and France.^[4] The US data showed that ICU admission of patients with liver cirrhosis cost $3 bn annually and mortality rate was as high as 45%.^[5] A 2010 United States Renal Data System report showed Medicare spent $29 bn in 2009 for people with end-stage renal disease.^[6] Heart failure associated hospital admissions to the NHS cost more than £ 600 million per year. Annually, heart failure accounted for more than 80,000 admissions in the UK, more than 200,000 in Japan and more than a million in the USA.^[7]

The less predictable trajectory of chronic non-malignant conditions has led to fear of resources being saturated by patients with long-term illnesses. Expansion of services to such patients requires a general review of funding. Emphasis should be given for better utilisation of existing resources to provide palliative care for these patients.

Worth mentioning here is the well-known ‘Kerala model’ which underlines palliative care as a basic human right.^[8] This government funded model has made large strides in enhancing patient comfort, enabling families to care for their loved ones. Palliative care team comprising paramedics and a trained doctor does home visit for patients at least on a monthly basis and provides equipment and medicines, as required. They perform minor procedures such as bladder catheterisation and nasogastric tube insertion.

Although India lags behind in palliative care services, the state of Kerala with its world class public health system has been exceptional. The Kerala model envisions the building of palliative care capacity on a larger scale by training every caregiver to provide the same.

Major obstacles in implementing home-based palliative approach to care of patients with organ failures are lack of training of medical professionals, lack of public awareness and financial constraints.

Palliative care approach should be incorporated into medical training at each level for doctors and nurses, right from undergraduate level to subspeciality training. Efforts are already on to start speciality medical training courses in palliative care. In patients with advanced disease, physician should initiate the discussion on home-based care, as a treatment option with the patient, in the presence of the family. Continued education programmes for the caregivers should be conducted on a regular basis.

Improving public awareness about home-based care is essential. Often, patients with non-malignant diseases are unaware of their prognosis. After taking inputs from the treating physician and considering the best interests of the patient, the family should facilitate the primary team to chalk out a treatment plan. Bear in mind that, resuscitation preferences may vary over time.^[9] A collective effort using social platforms and mass media should be made to bring about change in mindsets of the general public. We have made a humble effort to this end, by publishing a write up on the importance of home-based palliative care in one of the leading dailies in India, The Hindu.^[10]

Financial constraints can be yet another stumbling block. Governmental policy should address funding of palliative care. In the UK, palliative care services are mostly provided by non-governmental charity organisations, mostly focusing on advanced malignancies.^[11] The scope of home-based palliative care should not be restricted to patients with advanced malignancies, but must incorporate patients with end-stage organ failure.

To summarise, there is a growing need for palliative care services for chronic non-malignant conditions. Home-based palliative care is a viable option in balancing better resource utilisation and patient comfort. A favourable governmental policy toward palliative care and better awareness among medical personnel and the general public is essential for this model to succeed.

Quality of life matters, and so does dying with dignity!!