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Thursday 5 April 2018

MILES TO GO BEFORE WE SLEEP


[ This article was published on the op-ed page of THE NEW INDIAN EXPRESS ON 4.4.2018]


               The Supreme Court judgement of 9th March legalising the Living Will or Advance Medical Directive has opened the door to a dignified death but few will be able to walk through these doors because of apparent confusions and the red tape in which the process has been enmeshed. All the five Hon’ judges do not appear to be on the same page as regards the circumstances under which the Living Will shall kick in. Does it apply only to “ withdrawal of medical treatment” or does it also cover “ refusal to accept certain extreme forms of treatment”?
  The CJI is clear that it applies to both when he says that “ a competent person…has the right to refuse specific treatment…even if such a decision entails a risk of death.” He is supported in this finding by both Justice DY Chandrachud ( “ the right of..an individual to refuse medical treatment is unconditional….”) and Justice Bhushan ( “ an adult human being…is fully entitled to refuse medical treatment or to decide not to take medical treatment and may decide to embrace the death in a natural way.”). Justice AK Sikri , however, stops short of saying so: he states that passive euthanasia can be permitted “where a patient is in PVS ( Permanent Vegetative State) and he is terminally ill, where the condition is irreversible, or where he is brain dead.” It needs to be noted that such a condition can generally be diagnosed only when a patient has already been administered life support measures in an ICU, without any benefit. Therefore, what he seems to be giving his approval to is withdrawal of life support, not to refusal to accept treatment, which lies at the heart of the Living Will concept. There appears to be a divergence of views here, which may pave the way for challenges to the whole judgement in future, I fear.
   Even more critical to the true intention of a Living Will, however, is the multiplicity of “ safeguards” built into the judgement regarding both the execution and the operation of the Advance Directive. It provides that the LW has to be signed by the testator, two witnesses and a judicial magistrate; copies have to be filed with both the court of the JMIC and the local body. Upon hospitalisation the JMIC shall send a copy of the LW to the hospital, which shall set up a medical board to recommend whether its provisions  should be given effect to. This report will then be forwarded to the Collector who shall then constitute a second medical board for a final opinion. This has then to be sent to the JMIC who, after personally visiting the hospital and seeing the patient himself, will pass the final order. An appeal against the reports of the medical boards or decision of the JMIC shall lie in the High Court only.
   I have two reservations about this process. First, why is it necessary to have three levels of scrutiny before giving approval to the LW? The whole idea of such an Advance Directive is to be spared the kind of aggressive, painful and expensive “ life support” interventions that may “prolong” life but not improve its quality. This is an individual and extremely personal decision and is taken knowing fully well that such treatment may keep the person alive- but he does not wish to live this kind of undignified, dependent existence. The judgement itself accepts this argument when it states ( Justice DY Chandrachud): “ Neither the law not the Constitution compel an individual who is competent and able to take decisions, to disclose the reasons for refusing medical treatment nor is such a refusal subject to the supervisory control of an outside entity.” [ Italics provided by author]. The CJI also fully supports this position: “ But where a patient has already made a valid Advance Directive which is free from reasonable doubt and specifying that he/she does not wish to be treated, then such a directive has to be given effect to.” [ Italics provided].
   The procedure prescribed, however, contradicts the above findings because it effectively takes the power of the final decision away from the testator of the LW and hands it over to two medical boards, a Collector and a Judicial Magistrate. It completely undoes the good work in the rest of the judgement. The emphasis of the Court should have been on the first stage, viz. the execution or inscription of the will to ensure that it is voluntary, informed and authentic, and to that extent the procedure provided is unexceptionable. But the codicils in the second stage- giving effect to the will- negate the concept of primacy of the patient or the stated objective of the judgement that “ the best interest of the patient shall override the State interest.”
   Even otherwise, the second stage “safeguards” appear to be excessive and shroud the whole exercise in so much red tape that it is doubtful whether many people would be able to take the route to what the Court terms “ an easy and gentle death” but in fact will be an expensive and traumatic journey. Precisely at a moment of intense distress, sorrow and stress the patient’s next of kin will be made to run from hospital to  courts, shepherded by grasping lawyers, to give effect to the LW. The whole process is bound to take weeks, if not months, given how slowly the wheels of the judiciary grind. Applications for forced abortions take so long to decide that quite often the 22 week stipulation is exceeded and another unwanted child is the only result. The caution shown by the Court is, in my opinion, quite disproportionate and makes the whole scheme unworkable. It is perhaps justified in the case of “active euthanasia” or Physician Assisted Suicide but certainly not for “ passive euthanasia” which the Court itself has held to be a patient’s constitutional right. The various parts of this judgement are inconsistent with each other and need to be reconciled. I’m afraid a dignified exit for most of us is still some time away.

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