In September last year, an 83-year-old man presented to the emergency room at a tertiary-care teaching hospital in Kerala with severe chest pain and breathlessness. He was admitted to the intensive care unit, where I was on duty as an intensivist. The patient had been diagnosed with terminal lung cancer a few months earlier, and sent home to live the time he still had left. Since then, as his condition deteriorated, his family had already brought him to the hospital thrice. Each time, he was admitted to the ICU, where he was treated to relieve his symptoms before being discharged.
Once again, we started the patient on a battery of relief treatments. He was injected with opioids to relieve his pain and given steroids, he inhaled bronchodilators and oxygen to relieve his breathlessness. His relatives were asked whether, if and when the need arose, they wanted him to receive advanced life support—ventilator care and other invasive treatments—and whether they could afford them. They said they did, and could.
In the world of palliative care—a branch of medicine focussed on improving the quality of life of people with life-limiting illnesses, by relieving physical symptoms such as pain and offering psychological and spiritual care to both patients and their caregivers—practitioners distinguish between a “good death” and a “bad death.” A good death is one where the patient dies peacefully, without pain, in the presence of her loved ones and often at home. A bad death is one where the patient dies alone, often in unbearable pain, typically after having her life prolonged by aggressive and dehumanising care, usually in an ICU.
Too many deaths in India fall into the second category. According to a 2009 report by Human Rights Watch, about seven million patients need palliative care in India every year, but only a small fraction of them receive it. A 2015 study by the Economist Intelligence Unit—a research firm affiliated with the The Economist—indexed the quality of death of patients in 80 different countries, and ranked India sixty-seventh. The World Health Organisation recommends that every country institute a national palliative care policy, yet India has none. There has been no national-level discussion here on the right to die with dignity, and within families with a loved one approaching death it is often taboo to talk of just managing symptoms rather than continuing with futile therapeutic treatment. Across the country, efforts towards improving palliative care are hampered by existing laws and a lack of awareness and infrastructure—to the detriment of the dying, and consequently of the living too.
The Economist Intelligence Unit’s ranking was headed by Western countries and a handful of developed Asian states, with the United Kingdom ranked top. These places take a more mature approach to end-of-life decisions, particularly in emphasising compassion and respecting a patient’s autonomy. Terminally ill patients are asked early on, when they are of sound mind, what their goals are for the time they have left, what they would consider a good death, and what their preferences are regarding artificial life support. For instance, a patient might be asked whether, if her breathlessness becomes worse, she would want to be connected to a ventilator; or whether, if her blood pressure falls and she goes into shock, she would want invasive arterial and central venous lines attached to her body, so that drugs could be pumped in to keep her heart going. The patient has the right to refuse treatment based on an informed choice—to say, for example, that all she wants is adequate pain relief, without any invasive or aggressive interventions—and can record her preferences in a document called a living will, or an advanced directive. The healthcare systems in these countries are legally bound to respect such wishes. If a patient is not of sound mind or there is no documented living will, then her relatives are asked what the patient would have wanted—not what they would want.
In India, there is a fight-to-the-death mentality about treating the terminally ill. There are no legal provisions for living wills, or for withholding or withdrawing advanced life support. Doctors treating a patient who is past the point of being able to make her own decisions are bound to obey the wishes of her relatives, who typically opt to use all possible means to prolong her life, no matter how artificial that life might be. Terminally ill patients’ own previously stated wishes are often ignored. Since there is no access to home- or hospice-based palliative care in most of India, even in cases where a family would want to keep a dying patient out of hospital they rarely have a choice. Even doctors who treat terminally ill patients don’t receive training in end-of-life care. The Medical Council of India has yet to include palliative care in the national curriculum of medical education, whether at the undergraduate or postgraduate level.
Beyond the question of patients’ comfort and choices, the present situation also has wider implications for the medical system, and for society as a whole. India’s over-reliance on ICUs for end-of-life care comes at serious cost. Numerous senior intensivists I have spoken to estimate, by rough average, that about half of the ICU beds in their hospitals are filled by patients with no chance of recovery. One Indian study from 2010 determined that about 70 percent of terminal cancer patients admitted to ICUs develop multiple organ failure and become dependent on advanced life support. They spend about a month in the ICU on average, and a majority of them die there. Given India’s low spending on healthcare—and so a limited number of ICU beds and ventilators—this becomes socially irresponsible, as terminally ill patients take up time and resources that would be best put to treating patients for whom ICUs are really meant—those with serious ailments for which there is a cure. The financial costs are also high. Approximately 90 percent of all ICU beds in India are in private hospitals, where intensive care costs at least Rs 5,000 per day.
The money spent on ICU treatment for terminal patients could be better used if directed at dedicated palliative care. Research from the United States has shown that, even after all the expense, terminal patients and their loved ones are usually unsatisfied with the care they receive in ICUs, and their expectations for pain relief, and needs for personal and psychological care, remain unmet in hospitals.
To address the situation here, India will need legal reform, and a concerted shift in the medical system to provide greater access to end-of-life care outside hospitals. Such care, if properly planned, can be provided effectively and affordably in patients’ homes, through community-based approaches. There are numerous good examples of such systems across the world, but perhaps the best one for India to consider already exists on its soil.
In 2008, Kerala became the first state in the country to adopt a palliative care policy. Today, its approach is held up as a model for resource-poor health systems everywhere. Here, it is mandatory for every district to provide palliative services through primary healthcare centres. The state has amended its laws to make it easier for palliative-care providers to administer morphine (other states are gradually following suit). A large network of trained volunteers helps to identify patients’ needs, and provide social and psychological support to them and their families—something almost entirely absent in hospital-based end-of-life care. Medical officers and nurses are also given specific instructions on palliative medicine through NGOs. The most notable one is Pallium India, the only palliative-care centre in the country affiliated with the WHO, and a crucial force in establishing and sustaining the Kerala system.The model is financed through a mix of government funding and community donations, and, for the most part, patients remain in their homes. Between public health facilities and NGOs, there are more than 200 palliative-care units in the state, whereas there are fewer than 100 in all of the rest of the country. According to Pallium India, outside Kerala, only 14 states offer any form of palliative care, and their services remain reliant primarily on medical institutions rather than community mobilisation.
But even in Kerala, Pallium estimates that the system meets only about half of the total need, and so cases like that of the 83-year-old patient remain commonplace.
Over the next three days, the patient’s condition worsened inexorably. As his vital organs failed, we compensated for their functions with drugs and invasive tubes. Toxins accumulated in his blood, and as they began affecting his brain he became disoriented and irritable. Confined to a cold bed, isolated from his family and friends, and at the mercy of strangers in white coats, he had a mental breakdown. He raved about how the nurses were trying to kill him, and demanded that he be set free. Soon, he could do little more than stare upwards, make wild gestures with his hands, and breathe in heavy gasps. His relatives, waiting outside the ICU, kept asking us to do everything we could. With all other options exhausted, we intubated him and connected him to a ventilator.
On the last morning of his life, the intensive care team was at his bedside at around 8 am while making rounds. We knew he would die soon, and there was nothing more to do. We wrote so on his chart: prognosis poor. We counselled his relatives once more about his critical condition, and moved on.
An hour later, the code blue was announced. Two doctors were taking turns giving him chest compressions when we reached the ICU, and every alarm on his monitor was crying for attention. A nurse was breaking ampoules of drugs for injection from an emergency trolley, and another was charging a defibrillator. A rib broke. Frothy red fluid leaked out from the ventilator tube in the patient’s mouth. We delivered 360 joules of electricity over his heart. Someone had forgotten to draw the curtains shut, so the last moments of his life became a public spectacle. We continued for half an hour before we declared him dead.
The death-care began. The curtains were finally drawn around his bed, and nurses started removing his plastic tubes. Besides the one in his mouth, there was one in a vein in his neck that had sent medicines to his heart; one in his nose that went down to his stomach; and another in his penis to drained his urinary bladder. After these were all out, the patient’s nasal and anal orifices were packed with cotton. His hands were tied together at the front, so that when the body became rigid it would maintain a posture of dignity.
A roll of gauze was wound around his jaw to shut it, and tied into a neat bow over his head. A nurse applied tincture of benzoin to his lips, so they would stick together and forever seal him in his peace.
The body was cleaned and wrapped in a shroud, and a white sheet was placed over it. Later, it was sent to the mortuary. The bed was cleaned and fresh sheets were laid. The curtains were pulled open.