End of Life and Palliative Care in Neurology: Does Autonomy Matter?

The recent supreme court of India judgment on autonomy makes it necessary for all practicing neurologists to appraise themselves of the changing legal framework for End-of-Life decision-making in India. A pathway has been prescribed for advance care planning and medical futility decision-making. This is an evolving landscape and in a diverse country may vary substantially by geography. Living wills and advance medical directives can be prepared by our patients, and we will be required to honor these instruments. Catastrophic brain injury and life-limiting neurologic illness both require us to maintain our commitment to care when cure is no longer possible.

On the 9th of March this year, a five-judge constitution bench of the supreme court of India (SCI) passed judgment with major and far-reaching consequences for medical practice and end-of-life care (EOLC).[1] With this and an earlier ruling,[2] SCI has expanded the political concept of liberty into the individual space. Both privacy and autonomy are now constitutional rights. Autonomy here refers to the individual's right to choose, refuse, and otherwise regulate her medical treatment. This right comes into sharp focus when medical choices have to be made at the end of life and in this regard we need to recognize a duality and a continuum between Western and Indic constructs. The liberal Western tradition is spelt out by Beauchamp-Childress.[3] Autonomous patients are rational and reasonable agents who act intentionally with a full understanding of their own interests and without any controlling external influences. The physician's obligation to respect autonomy may even outweigh the duty of beneficence if the patient's rationality and knowledge of the situation can be confirmed. In the Indic tradition, the closest Sanskrit term is “Swa-dharma”[4] and is understood as a form of socially negotiated consent with enough scope for the interplay of personal choice and interpersonal factors. Critical reflection during decision-making allows identification with the decisions being made, perhaps even with conscious acceptance of an external authority. Identification with these decisions thus includes the scope for factoring one's identity as a social being with emotional links to others.

Too many Indians die badly.[5] Quality of death survey in 2010 rated us last out of 40 large countries. In 2015, our position improved a bit since the survey could identify 13 countries even worse than us in a sampling of 80 nations. What do we lack? First, our patients are usually denied the knowledge of approaching death. Without this, professionals cannot explain what lies ahead. Emotional closures are made impossible. This denial of reality is an unspoken conspiracy between family and healthcare personnel that effectively scuttles the patient's autonomy.[6] Families request us not to tell the patient the diagnosis and prognosis out of a misplaced solicitude and doctors readily collude. Ostensibly this is because the exact prediction of duration of survival is difficult, especially in noncancer diagnoses. However across specialties, there are now enough data to identify individuals with a > 50% chance of mortality in the following 1 year.[7] If in other clinical situations, we can accept that an uninformed patient is a culpable act of medical omission, then why not at the end of a life? For neurology patients, the window between diagnosis and loss of communicability is often limited, and this opportunity should never be wasted. We evade our responsibilities here, primarily because we are not trained in initiating and conducting these difficult conversations. Neither are we taught the basics of handling the myriad symptoms of dying, which are largely common regardless of the basic illness. This communication and symptom management is handled worldwide by the small but growing specialty of palliative medicine. India has barely 200 qualified palliative care physicians, and most of them are completely occupied with cancer patients in the large cities. Hence, the second major reason for bad deaths in India is the lack of capacity in the medical system.

The SCI autonomy judgment finally begins addressing the last major reason for bad deaths in India. Until now as citizens, we had no constitutionally mandated control over our last days. We were helpless creatures of a system that largely operated in default mode: the default setting being “Do everything!” Since the 1960s, as medical technology became increasingly sophisticated, people have recognized and resisted the medicalization of death. Living wills (LW) began as a human rights concern in the USA and grew in parallel with the consumer rights movement.[8] In 1990, the US Congress passed the Patient Self Determination Act, under which all federally funded medical facilities are required to inquire with patients if they have an advance medical directive (AMD) and/or if they would like to complete and activate such an instrument. LW/AMD and the overarching concept of advance care planning (ACP) have been defined as “a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding the future medical care.”[9] The goal of ACP is to help ensure that people receive medical care that is consistent with the above during serious and chronic illness. The 9 March SCI judgment lays out a procedure for LW/AMD and also for determination of medical futility, but this prescribed process is somewhat impractical and needs fine-tuning.

Neurologists' primary responsibilities in EOLC appear in two situations: catastrophic brain injury (CBI) and life-limiting neurologic illnesses (LLNI). Patients with CBI are admitted to altered mental status and life support treatments (LST) are often instituted immediately.[10] It is appropriate to continue a trial of LST for 24–72 h until the clinical situation reaches some clarity. Some patients may satisfy criteria for brain death, and the topic of organ donation may be broached. It should be pointed out that the apnea test is a clinical procedure that can be performed even when organ donation is not planned. It is appropriate to perform it and inform the family. A careful performed apnea test and brain death determination are incompatible with “survival” without artificial ventilation;[11] although, there are reports of young individuals maintained on home ventilation for decades.[12] Unlike the USA, we do not have any legislation on declaring death by neurologic criteria,[13] but in our opinion, LST can be withdrawn unilaterally by the medical team after counseling the family.[14] Patients who do not satisfy criteria for brain death may undergo interventions of various kinds, both medical and surgical. Most patients with CBI even with a Glasgow Coma Scale of 3, do not remain in coma indefinitely. Some brainstem functions return over 2–4 weeks. The main transition is the conversion of endotracheal intubation to a tracheostomy which is usually performed at the end of 2 weeks. This is a very major decision with long-term implications and must not be taken lightly. By this stage, it should be possible to prognosticate about long-term neurologic outcome and the family must be counseled adequately, sensitively, and appropriately.[15] In the future, it is possible that some individuals may have LW/AMD that cover this situation. If this instrument is not available and if the individual concerned had not expressed any clear wishes, the patient's surrogates must be clearly identified, using the hierarchy laid out in The Human Organ Transplant Act. A process of shared decision-making (SDM) between appropriate surrogates and the treating team can then be embarked on and consensus sought.[16] Since the surrogates are usually also the putative long-term caregivers, the social consequences of these decisions cannot be ignored. If the surrogate/s opt/s against a tracheostomy, palliative extubation is performed. Other medical management and LST may or may not be continued depending on the outcome of SDM and patients may be moved out of the ICU for comfort care. In those patients who undergo a tracheostomy, percutaneous endoscopic gastrostomy is also often performed in preparation for discharge and long-term care and rehabilitation. Some patients enter the persistent vegetative or minimally conscious states and depending on the level of care can survive decades.[17] Emotionally involved caregivers may wish to continue care indefinitely for various ostensible reasons, but hospital systems have an ethical responsibility of distributive justice. Clinicians are well advised to be clear about their position in individual cases since disputes are inevitable. If and when the withdrawal of clinically assisted nutrition and hydration is decided on, court orders are necessary worldwide. The actual procedure may take 10–14 days and protocols are available.[18]

The other major situation is that of chronic disabling neurologic conditions such as motor neuron disease, Parkinsonism, dementia, and muscular dystrophy. LLNI may be progressive or nonprogressive. Even in patients with nonprogressive illnesses, age increases dependence and vulnerability more than for normal individuals. A formal process of serious illness communication (SIC) is necessary both at diagnosis and when on-going decline crosses disease-specific markers.[19] Not all patients are ready for these conversations and it is necessary to explicitly seek their permission before beginning. These conversations are substantially improved by clinician training in communication skills and help identify patient preferences for health outcomes and treatments. Even clinicians without formal training in these skills can benefit from using structured protocols (SPIKES, NURSES).[20] Ideally, a competent patient should also be introduced to the concept of LW/AMD and encouraged to prepare it. With disease progression, symptom burden increases, and it may be necessary to formally involve palliative care. Neuropalliative care is a new subspecialty in neurology and those of us in India who feel the need to get trained will not find it difficult to do so.

In 1950, those who framed our Constitution, in the Preamble, enjoined all of us to work toward securing for all our fellow citizens justice, liberty, equality, and fraternity. As part of the citizen-elite, it is our duty to make certain that all Indian citizens have the right and ability to take charge of their last days. As neurologists and physicians, we should continue to care when cure is no longer possible.

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Conflicts of interest

There are no conflicts of interest.