DILEMMA In the absence of guidelines for terminally ill patients, doctors as well as families of patients are left floundering
MUMBAI: Two months ago, Seema ( name withheld on request) f aced the toughest moment of her life. She was asked to choose between shifting her husband Ramesh, 62, suffering from cancer of the immune system, to the intensive care unit or allowing him a dignified death? Seema chose the latter.
With doctors’ view that the disease had no cure, Seema knew that she was indeed ending his suffering, instead of prolonging it by using high-end drugs. Ramesh died a peaceful death, with his family members by his bedside.
“Medical intervention would have addressed the complications of the disease, but there is always a chance of recurrence. Our doctors gave him medicines that took care of his pain,” said Dr Mary Ann Muckaden, professor and head of palliative care medicine at Tata Memorial Centre, Parel.
Ramesh, according to doctors, is among the few people in the country who have access to what could be termed a “good death”. A recent international report put India at the bottom of the list of countries that were assessed for the quality of endof-life care or quality of death index, as the study puts it. The report was commissioned by Lien Foundation and pre pared by t he Economist Intelligence Unit. The report stated that in India the problem is the vast population, which makes end-of-life coverage available to only a fraction of those who need it.
Experts said the question of not giving additional treatment or withdrawing existing life support is disputed because of lack of legal sanction. Although several hospitals honour the patient’s or his family’s wish not to resuscitate, it does not have a legal sanction, said experts from legal fraternity.
Experts feel legalising the withdrawal of life support for terminally ill patients could lead to its misuse. “We are not a mature society, so there is greater risk of misusing the option of withdrawing treatment, especially as disputes on inheritance of property are common in India,” said Amit Karkhanis, senior lawyer, who is a consultant for many city hospitals on medico-legal cases.
Karkhanis said the country urgently needs guidelines for end-of-life care, instead of a law legalising active and passive euthanasia. “Most patients who are detected with advanced cancer are put on life support and it is illegal to take them off ventilator support. But families often get patients discharged against medical advice,” said Karkhanis.
This practice, palliative experts said, goes against the idea of a dignified death. “Even if the family takes the patient off life support, the patient will be in immense pain if not given drugs to ease it,” said a senior doctor from a private hospital.
Most hospitals allow family members to sign a ‘ negative consent’, where they can mention the kind of treatment they don’t want their relative to undergo. “Once the patient is undergoing any medical treatment, we can’t stop it. But family members can sign a consent form, where they can mention their don’ts,” said Dr Ram Narain, executive director, Kokilaben Dhirubhai Ambani Hospital, Andheri, which has one of the largest ICU facilities in the city.
Dr Narain said that in the absence of a law, hospitals cannot honour the wish of the patient, even if he or she has left a ‘living will’. “At the end, it is the relatives who have to take the decision. Currently, very few relatives opt for negative consent, as most of them want to explore the options of treatment,” he said.
The Indian Association of Palliative Care ( IAPC), an umbrella body of more than 1,000 palliative care practitioners, recently released its stand on end of life care policy for patients who are dying with an advanced terminal illness.
“Doctors indulge in fear-based practice. Even when they are aware that the outcome of the treatment is not going to be positive, they continue with it. There is a need for effective communication between the doctor, patient and relatives,” said Dr Naveen Salins from IAPC, adding 70% of patients who are resuscitated do not survive.
Dr Salins who is also the editor of Indian Journal of Palliative Care said a nationwide policy will help doctors to do what is in the “best interest of the patient” instead.
‘In our country, the will of the dead is respected, but his wish to die is not’
MUMBAI: The chief editor of the Indian Journal of Critical Care Medicine, Dr Raj Mani, states it is important for doctors to work in the interest of the patient. Excerpts from an interview:
What is the role of a doctor in end-of-life care?
A doctor needs t o respect a patient’s choice, which also includes his right of not undergoing unnecessary medical treatment. While doing so, the doctor also needs to work in the best interest of the patient. He has to seek the consent of his patient before conducting any surgery or taking decisions on end-of-life care.
Can the decision of the family be trusted, especially when it comes to withholding or withdrawing treatment?
In case the patient is not fit to give consent, the family comes into the picture. But the family may not always be the best representative and may have their prejudices. In other countries, a patient ticks a column of code or no code, which the doctors are expected to respect, unless it is medically contrary. Many countries have legalised physician-assisted suicide and the Indian law is still silent on a living or will in advance, where the person can write directives on treatments. A will of the dead is respected but the irony is that his wish is not.
In the absence of a law, can a doctor get into trouble for respecting the patient’s wishes?
The legal thinking is hopelessly skewed as they are not looking at the ethical dimensions. We have to weigh the burden versus benefits and see to it that the medical community is not pushing the ethical boundaries. There is a point beyond which you cannot offer any cure, but the medical technology is advancing in such a way that it can keep the patient alive endlessly. Also, any policy dealing with withdrawal or withholding of therapies will have to account from section 309 of the Indian Penal Code, which declares abetting suicide in any form as punishable.
How can end-of-life care be taken in India?
One of the foundations of modern medicine is to respect the choice of patient and act towards his benefit. If patients are given the option of making a will in advance, they can decide the course of treatment they wish to receive. When patients lose the capacity to make a decision, the nextof-kin have to be consulted. Autonomy is extremely important and hence doctors have to take the patient’s wishes into consideration.
City doctors divided on euthanasia debate
ABROAD, A TEAM OF DOCTORS FROM ACROSS DISCIPLINES ASSERT THE IRREVERSIBILITY OF THE DISEASE AND THE DECISION TO WITHDRAW TREATMENT IS TAKEN. DR RAHUL PANDIT, secretary of Indian Society of Critical Care Medicine
MUMBAI: While some fear misuse, some feel it is a necessity – the question over withdrawing life support for terminally ill patients has left the medical community in the city divided.
Some doctors believe that in the absence of a protocol, the option to withdraw treatment might be misused by families. “Endof-life care cannot be mistaken as an easy way out for families who don’t want to care for the patient. You could only look at ending pain in cases where the existing medical science can’t help,” said Dr S Utture, member of the Maharashtra Medical Council.
Dr Utture said a majority of hospitals obey patients or their families’ ‘do not resuscitate’ directive. “While DNR is an act of omission, euthanasia is an act of commission,” said Dr Utture.
Doctors said citing Aruna Shanbaug’s case is not correct, as she had received “extraordinary” care. Shanbaug died at the KEM Hospital on May 18, after living in a persistent vegetative state for 42 years. “She was in a hospital, with the nursing staff dedicatedly caring for her. Such care is nearly impossible for a similar patient at home and hospitalisation, too, would be very expensive,” said Dr Jayesh Lele, president, Indian Medical Association (IMA)
During a workshop to discuss the ethical limits of euthanasia, the IMA had strongly advocated the need for guidelines to handle patients, who have very little to benefit from active medical treatment. “Patients become guinea pigs in such situations, where new drugs and treatment, whose benefits are not always known, are tried on them,” said Dr Lele.
Experts said the heterogeneous nature of Indian society makes it difficult to practise “comfort care” for patients battling cancer and organ failures. “In our country, withholding treatment is possible, but withdrawing is not. Abroad, a team of doctors from across disciplines assert the irreversibility of the disease and then the decision to withdraw treatment is taken with the family’s consent. The same should be applied to Indian hospitals,” said Dr Rahul Pandit, secretary of Indian Society of Critical Care Medicine.
WHAT THE MEDICAL COUNCIL OF INDIA SAYS
Practising euthanasia constitutes unethical conduct. However, on specific occasions, the question of withdrawing supporting devices to sustain cardio-pulmonary function, even after brain death, shall be decided only by a team of doctors and not merely by the treating physician A team of doctors shall declare the withdrawal of the support system. Such a team shall consist of the doctor incharge of the patient, chief medical officer/medical officer incharge of the hospital and a doctor nominated by the incharge of the hospital from the hospital staff, or in accordance with the provisions of the Transplantation of Human Organ Act, 1994.
THE INDIAN JOURNAL OF CRITICAL CARE MEDICINE
People having cancer, HIV, thalassemia and cerebral palsy may need palliative or end-of-life care More than one million people are detected with cancer annually in India, with more than 80% of them reporting the disease in advanced stages Palliative care at home is the most cost-effective, relevant and practical option in India, according to experts Doctors said that owing to the lack of awareness about end-of-life care, many patients die in hospitals, increasing the financial burden on their families Sometimes the high cost of treatment forces many patients to get discharged from the hospital and go home, where they die in pain.
RELIGION, CULTURE AND EUTHANASIA
THE JAIN CUSTOM OF SANTHARA
Santhara is fasting unto death The debate on the practice started when Kaila Devi Hirawat started her fast unto death in October 2006, much against the wishes of her neighbours and family Her case led to a debate on whether Santhara could be termed a form of euthanasia However, experts from the community said that euthanasia and Santhara cannot be compared
THALAIKOOTHAL
It is an age-old practice of helping an old and bedridden person end life in Tamil Nadu, which, though illegal, is reportedly prevalent in villages As part of the custom, the elderly is given an oil bath in the morning and subsequently given tender-coconut water. This apparently leads to high fever, fits and ultimately death, claim reports. There is no clarity whether the custom is still in practice.
MANY OPT FOR MERCY KILLING, BUT SOME HAVE NO CHOICE
‘IT’S ABOUT AUTONOMY’ Last month, Jeffrey Spector, a businessman from Lancashire, travelled to Switzerland to receive assistance to die He was diagnosed with a spinal tumour, which although was unlikely to kill him, would have led to progressive paralysis and dependence six years ago. His choice, supported by his wife, was to die. Spector’s case was narrated by Katherine Sleema, a clinical lecturer in palliative medicine at King’s College London in a blog, ‘Assisted dying is about more than autonomy’ in the British Medical Journal. ‘WOULD CONSIDER IT’ Physicist Stephen Hawking, on a BBC programme, said he would consider assisted suicide, if he had nothing more to contribute and was a burden to those around him. 42 YEARS IN VEGETATIVE STATE In March 2011, the Supreme Court disposed of a petition by social activist Pinki Virani, who sought euthanasia for Aruna Shanbaug, a former nurse at KEM Hospital, who spent 42 years in a vegetative state after a sexual assault left her mentally and physically paralysed Shanbaug died of cardiorespiratory arrest on May 18 In a landmark judgment, the court allowed “conditional” passive euthanasia for the first time. Shanbaug was not on life support, but had a feeding tube and was being given medicines occasionally.
theysay
WE ARE NOT A MATURE SOCIETY, SO THERE IS GREATER RISK OF MISUSING THE OPTION OF WITHDRAWING TREATMENT, ESPECIALLY AS DISPUTES ON INHERITANCE OF PROPERTY ARE COMMON IN INDIA. AMIT KARKHANIS, senior lawyer, who is a consultant for many city hospitals on medico-legal cases
END-OF-LIFE CARE CANNOT BE MISTAKEN AS AN EASY WAY OUT FOR FAMILIES WHO DON’T WANT TO CARE FOR THE PATIENT. YOU COULD ONLY LOOK AT ENDING PAIN IN CASES WHERE THE EXISTING MEDICAL SCIENCE CAN’T HELP. DR S UTTURE, member of the Maharashtra Medical Council
DOCTORS INDULGE IN FEAR-BASED PRACTICE. EVEN WHEN THEY ARE AWARE THAT THE OUTCOME OF THE TREATMENT IS NOT GOING TO BE POSITIVE, THEY CONTINUE WITH IT. THERE IS A NEED FOR EFFECTIVE COMMUNICATION BETWEEN THE DOCTOR, PATIENT AND RELATIVES.
DR NAVEEN SALINS, from IAPC
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