Palliative care cannot be ignored in context of passive euthanasia verdict
The article has been co-authored by Dr MR Rajagopal, founder chairman of Pallium India, and Smriti Rana, consulting psychologist at Pallium India.
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The Supreme Court of India passed a landmark ruling on the March 9, recognising a person's right to die with dignity and the validity of advanced medical directives in this context.
This is a huge milestone in many ways, and while it still leaves a few areas quite grey, the fact that a person's dignity in life and death is upheld as a fundamental guiding factor is reassuring and heartening. This can potentially apply to all 8.2 million people who die in India every year and who can afford to go to tertiary hospitals with facilities for artificial ventilation.
The Supreme Court ruling has put in place safeguards to ensure something of the magnitude of executing a living will may not be misused. Safeguards are necessary, however, there are two things to consider here.
First, the procedures prescribed as safeguards are not only unwieldy in their bureaucracy but are also unfathomable in how they may be navigated by a family for whom time translates into a matter of life and death. Implementation of the living will has to be approved by 1) the attending physician, 2) the board convened by the hospital, 3) the board convened by the district collector and 4) the local magistrate after a personal visit to the patient. This process is tedious and it will take a long time.
The entire point of the living will is to facilitate the patient's autonomy and wish to live her remaining days in peace, on her own terms. The executive procedures in their current form undermine the very idea they hope to uphold.
Second, in the prescribed procedures it has been stated that the medical boards convened both at the hospital as well as the district administration level, must include the head of the treating department at the hospital or the chief district medical officer of the concerned district, along with "at least three experts from the fields of general medicine, cardiology, neurology, nephrology, psychiatry or oncology with experience in critical care and with overall standing in the medical profession of at least 20 years.
The palliative care discipline is conspicuous by its absence. It remains an invisible entity in a world where it operates best - at the crossroads of life and death.
Often, a living will may be written out while a person is healthy enough to state what he/she wants. When an advanced or serious illness is diagnosed, often the game changes. In the deluge of chaos, anxiety and fear that follow, a person - often influenced by family - may not feel the same way as he/she did earlier. Or may be not. Whatever may be the case, as any family that has experienced serious illness knows, there are unrelenting voices encouraging treatment, invoking the rhetoric of war.
This is where the role of palliative care comes into play. Contrary to popular belief, palliative care is not restricted only to terminal or end-of life care. It does come into sharper focus when curative options are exhausted or rejected, but it can play a vital role right from the word go. If a palliative care team is engaged at the very outset, at diagnosis, conversations about possible illness trajectories, anticipated difficulties and distress symptoms, and associated prophylactic or interventional measures to minimise these difficulties would benefit patients and their families beyond measure. It would serve as one of the safeguards by creating plans of care that the patient, families and medical teams are all party to.
It would also clarify the ideas of realistic hope, address collusion, determine what a good death means to the patient, and what the family and medical teams can do to try and honour the patient's dignity right to the very end.
Giving legal validity to advanced directives is an important step in making end of life humane; but it is only one step. In addition to easing the process of documentation of advance directives and of implementing it on the ground or at the hospital bed, it is equally or even more important to ensure access to palliative care.
The duty of the medical system is not only to diagnose and cure, but also to ease suffering. We seem to have lost touch with that central tenet of healing.
Unless palliative care becomes an integral part of medical and nursing education and until medical, nursing and allied professionals adopt the palliative approach in their day-to-day practice, today's vast Indian burden of serious health-related suffering will continue to plague patients and their families.