A good death, demystified

The Hindu

3 days ago

Benjamin Franklin, in 1879, observed that certainty is limited to two things - death and taxes. Time and technology have proven him only half wrong. Sigmund Freud on the other hand, had remarked that we are all convinced of our immortality. Discussing death is considered, varyingly, macabre, ghoulish, grim or in morbid taste. Serious discussions on definitions of death, of personal, moral, legal and economic issues involved in death-related-decisions, seldom occur in Indian families. Do clinicians constantly exposed to death, become insensitive, forgetting that for the bereaved family, it could be the first experience?
From time immemorial, a doctor's primary avocation was 'to cure sometimes, to relieve often, to comfort always'. Until recently, there was no conflict of inter­est with this approach, when a doctor did his best to preserve life. However, the increasing availability of sophisticated medical technology and life support systems has changed the picture. The process of dying is now more protracted, and can be influenced to be prolonged. The importance paid to 'quality of life' should now also be paid to 'quality of death.'
Understanding death
Death (apoptosis) commences even in the unborn, where cells are programmed to die. Different organs die at different rates. Death is an ongoing process, not an isolated event. Saving lives is the raison d'etre for our existence as doctors, but at what cost? In the irreversibly critically ill patient, how long does one continue treat­ment? What is the purpose of such treatment? Today, one can keep a person biologically alive - heart, lungs, kidney and other organs functioning - but in coma, 'living' in a critical care unit setting. In 2018, the Supreme Court held that the right to die with dignity, is a fundamental right.
When the patient is unable to take part in the decision-making process of medical treatment, who will be the surrogate decision maker? Even if full information is given, is it reasonable to expect a calm, unruffled calculated decision to be taken, with death hovering around? Do we factor in the patient's desire? When is enough, enough? Should management decisions be based only on irrefutable scientific evidence and available technology? Do increased 'options' compound the issue? Do we spend quality time with caregivers understanding psychological, social and spiritual needs when death is imminent?
Illustrations from neurosurgical practice
A 92-year-old woman with a stroke that has affected both sides is encouraged to be taken home. She also has multiple hip fractures secondary to a trivial fall. Two months have elapsed. The patient is in coma for four weeks. Morphine patches are used for analgesia. The 70-year-old son cannot stand her suffering. After a discussion, the Ryles tube feeding is stopped, to facilitate an irreversible cardiac arrest. The heart goes on beating for another 72 hours, with the elderly children going through an agonising time.
How does one discuss a 'good death' with a just -married wife, when her husband has had a devastating bleed in the brain? How does one inform a retired professor of surgery that he has multiple secondaries not only in the brain but everywhere, and therapy will only postpone the inevitable?
Examining 'good death'
In 'good death', treatment preferences, quality of life/death and maintenance of dignity is as per the patient's desires. There is no distress or suffering for the patient, family and caregivers, and attempts are made to ensure little or no pain (through the use of morphine for instance). Death is consistent with prevailing clinical, cultural and ethical standards. Excessive, futile treatments are not used to prolong life. There is trust, support and comfort with the team and an opportunity to discuss all beliefs and fears and to bid farewell to one's near and dear.
When end of life is inevitable and patients/families consent, aggressive therapies, medications and interventions are stopped but care is never withdrawn. A good death is not a single final event, but a series of social events. The team commiserates with the family, empathises, sympathises with the individual who has placed his/her life in our hands. Support is necessary throughout the dying process. Earlier understanding facilitates a good death. Dying at home is an important component of good deaths. Terminal illnesses offer time for discussion and resolution of unfinished psychological and practical business. A good death includes not being a burden to the family, leaving affairs in order and having a sense of fulfilment.
A bad death is being kept alive against one's wishes, a loss of dignity, an inability to communicate one's wishes, the excessive use of medical technology and dying alone.
India was ranked 67 out of 80 countries, on the 2015 Quality of Death Index, published by the Economist Intelligence Unit, signalling the urgent need to legislate on, and implement good death policies in our country.
(Dr. K. Ganapathy is a distinguished professor at the Tamil Nadu Dr. MGR Medical University and past president of the Neurological Society of India and the Telemedicine Society of India. Email: [e-mail])