A question of life or 'good death' for the terminally ill 

Sunday, May 6, 2018
a question of life or

Dr Rajesh Gupta is a senior pulmonologist and an intensivist. Around six years back, his father-in-law was diagnosed with rectal cancer, which had already spread to the liver. The disease had caused a lot of irreversible damage in his body. He suffered excruciating pain and had to be hospitalized multiple times.
The surgery and chemotherapy didn’t help much.

“I knew any curative treatment would only prolong his pain and agony. So, I decided to convey it to my parents-in-law. I suggested that he should not be ventilated under any circumstances,” he says. “It was the most difficult conversation of my life though being an intensivist I do it everyday at the hospital. My father-in law- died peacefully, surrounded by family.” 
There are several fears about dying, but the worst one for many is to die alone in a sterile setting with only the bleep of monitors and medical staff with covered faces for company. End-of-life care has always been a matter of debate across the world. A recent  Supreme Court judgment allowed people to prepare a living will where they can decide the kind of treatment and life-support interventions they want during a terminal illness, especially when they are not in a condition to take their own decisions. 

Soon after the judgment,  a 35-year-old Kanpur lawyer made a living will. He also appointed a nominee, who would take decision on his behalf, if need be.

But doctors feel no one other than a doctor can take a wise decision. " We have seen people coming out of coma and some succumbing to minor injuries. Patient, or patient's family, or lawyer-- nobody can take a better decision than the treating physician. So, it is important to educate and empower doctors to take such decisions," says Dr R K Mani, a noted intensivist.  
“In the context of critical care, the physician's approach to the patient has three dimensions: medical, ethical and legal. This is because care of the critically ill involves not only the application of complex and expensive life-supporting interventions, but also, when appropriate, their withholding or withdrawal,” he adds. 

Intensive care has two aspects -- therapeutic and life-supporting. In many cases, when a therapeutic trial of intensive care fails, life-supporting interventions only serve to prolong the process of dying.

People who advocate  end-of-life care (EOLC) believe in what is called the concept of a “good death” --  a peaceful end occurring in the presence of loved ones rather than an artificial and lonely end surrounded by the dehumanizing paraphernalia of critical care.
"In countries such as India, where most people pay for their health expenses, prolonged and futile life-support can impose enormous economic burden on patients and their families," says Dr Rajesh Chawla, senior consultant, respiratory and critical care unit, Indraprastha Apollo hospital, Delhi.
In fact, in 1976, the first hospital policies on orders not to resuscitate were published in the medical literature. The trend caught up fast and the number of patients dying with a decision to limit life support increased from 51% in 1988 to 90% in 1992 in the US.
Around 30 percent of the critically ill patients in the US withdraw curative treatment and receive only palliative care. Many groups of medical practitioners such as the European Society of Intensive Care Medicine, the International Symposium of Intensive Care and Emergency Medicine, the American Thoracic Society, and the Society of Critical Care Medicine, etc have
clear guidelines and protocols for the treating physicians, which makes it easy for the doctor to take a call in such situations. Many terminally ill people in The Netherlands and Tunisia also opt for planned discharge from the hospital.
 Studies show that European physicians have no difficulty in making end-of-life decisions in 81–93 percent of cases. While in India, doctors are unaware of ethical issues involved in such cases. There is lack of palliative care facilities and most people believe in fight-till-die attitude.
Recently, in a survey conducted by Economist Intelligence Unit (EIU), a business advisory country, India scored poorly in indices such as  basic EOLC environment, availability, cost and quality of EOLC. The EIU gave India a score of 2/5 in public awareness of EOLC, which the survey attributes in part to Indians’ reluctance to openly discuss death and dying.
EIU also reported “lamentably poor” palliative care system in all parts of India except in Kerala, where there exists a community-driven hospice service, which extends palliative care to terminally ill patients. While the palliative and hospice care has evolved exponentially in the US, it is still at a nascent stage in India.
Doctors feel that an early disclosure of prognosis and a frank discussion with the patient and his family would help. There is a need for social and legal reform in India as far as end-of-life care is concerned.
Besides, there is a need to study the concept of EOLC in the Indian context keeping in mind its social, cultural, economic and legal complexities. The doctors in India should be educated about the importance of EOLC as a majority of them have inclination towards curative treatment than supportive or palliative care. In India some patients withdraw medical help under LAMA (Leaving against medical advice), which is mostly because of unbearable financial burden.
Studies at some hospitals in India show that people withdraw medical help in terminal sickness, mostly when they are paying for the treatment. Age of the patient is also a major factor when a family decides to withdraw curative treatment. A recent report from Tata Memorial Hospital, Mumbai, states that 38 per cent cancer patients opt for EOLC.
A change in physicians' orientation is required to spread the importance of end-of-life care in India. They need to accept palliative care as an important aspect of medical care. "The physician is generally fearful of being accused of providing sub-optimal care or of possible criminal liability of limiting the therapies. Adding to his dilemma is a virtual absence of legal guidelines. In the absence of a strong legal framework, all efforts would remain futile," says Dr Mani.
Dr George Paul, a noted-maxillofacial surgeon  says while the ICU has brought several benefits to the seriously ill, it has also brought a cold fear about how one dies. “It is perhaps time for the medical profession to rethink on how they need to segregate and whenever possible give patients an opportunity to die surrounded by their near and dear ones."


Reference and Sources: Indian Society of Critical Care Medicine (ISCCM) guidelines 2005, 2012. 

Indian Association of Palliative Care (IAPC)

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