Mr AS, a frail but sprightly 91-year-old developed pneumonia and was admitted to a suburban Mumbai hospital. Within a day, his condition worsened rapidly with multiple organ failure. In the ICU, the physician explained to his son that the chances of making it through a critical illness were slim at such an advanced age. If he did survive, it would be as a bedridden invalid with multiple tubes. The decision to withhold life sustaining treatment (LST) was clear, since he had already instructed his family to let him pass away peacefully. He died 14 hours after entering the ICU without any fuss and with minimal suffering.
Mr KD, 84 years, landed in a Chennai hospital with the same problem but died seven days later on dialysis and other LST. The doctors insisted they were duty bound to do whatever it took to keep him alive till as long as medically possible. His family had no idea that ‘do everything’ is not always the correct option. His daughter has still not forgotten his last coherent words: ‘Please don’t torture me’. In the same country, why should two comparable hospitals produce such vastly different results?
Many Indian hospitals now provide quality of care comparable to the best in the world, and ICU standards are quite uniform. Yet the quality of death is patchy at best and often abysmal. Astonishingly, we as Indian citizens have no right to autonomy in our healthcare choices.
Our Constitution gives us liberty which is a political concept. Personal autonomy flows from this, as spelt out in the recent Supreme Court right to privacy judgment. But if one chooses to limit one’s medical care at the end of life, that choice has no validity and can be trashed by any doctor. He can go ahead with painful and futile procedures that one may have explicitly rejected.
As of now a doctor’s legal duty is to make every attempt to save life even if it means disregarding the patient’s clear instructions to allow natural death. Most Indian healthcare professionals are never trained to recognise and respond to end of life care (EOLC) needs or to provide even basic palliative care. This lack of a systematic approach or of training is seen at all levels: doctors, nurses, counsellors, administrators, etc.
Few hospitals invest in these inexpensive services which can actually save costs all around. Technology is obviously more profitable but surprisingly even government hospitals succumb to these lures. When this technologically advanced and expensive care is ultimately futile, the public suspects ulterior motives driving these costs.
The situation is very different in Western countries. The 1960s was the decade in which medical advances really took off. ICUs became part of the standard of care and really sick people actually started to come back well from hospital. In the US these were also the years of counterculture and civil rights movement. Medical paternalism (“Doctor knows best!”) began to retreat.
The living will (LW) was first discussed by the Euthanasia Society of America and then spelt out by Luis Kutner, a human rights lawyer from Chicago between 1967-69. Initially this was a document stating the patient’s values and her opposition to excessive medical care at the end of life. As patient education initiatives and consumer rights awareness evolved together in the 1970s to ’80s, the format changed to the Advance Directive (AD).
This is a more detailed document which actually makes choices from possible options in various disease scenarios in seriously ill patients. These include artificial ventilation, dialysis, chemotherapy, etc. Patients can and do choose full treatment if they so desire. Following public support, state legislatures passed laws validating these instruments.
In 1991, the US Congress passed the Patient Self-Determination Act. This required government funded hospitals to provide patients with information about their rights regarding healthcare decisions, especially their right to have an AD incorporated in their medical file.
An additional feature that is now almost always incorporated is the Health Care Power-of-Attorney (HCPoA). Since AD cannot cover all eventualities, the HCPoA is a relative or close associate (not the treating doctor or healthcare worker) who can use her discretion when required. The last innovation is the Physician Order for LST (POLST) form, in which a doctor actually signs out on instructions forbidding resuscitation measures, intravenous drips, tube feeding, etc. In some states in the US, the POLST is part of the electronic medical record and shows up first when accessed by emergency medical teams.
In those countries where EOLC is a natural part of the medical system, discussions with your doctors and trained counsellors begin as soon as terminal illness is identified or even when old age makes situations like those above likely. The road ahead is spelt out with as much clarity as is possible, unless one explicitly chooses not to be informed. Emotional closures with family and loved ones can then happen and these permit a peaceful passing.
Symptoms such as pain, incontinence, depression, etc are managed by skilled palliative care professionals whose business it is to help patients live as well and as long as possible with a serious illness until natural death occurs. The aim is for death to occur at home or in surroundings of one’s choice, with minimal or no discomfort. And the living will is the fulcrum of the citizen’s right and responsibility to take charge of her last days.
(The writers are on the Steering Committee of End of Life Care in India Taskforce (ELICIT))
First published here: https://blogs.timesofindia.indiatimes.com/toi-edit-page/why-we-need-living-wills-astonishingly-we-as-indian-citizens-have-no-right-to-autonomy-in-our-health-care-choices/