In a country with a limited number of artificial life support machines and an ever-teeming population, there is minimal understanding of the ethical issues involved that leads to ineffective utilisation of medical technology. There are myriad reasons for this, key being poor communication between the patient, his surrogates and doctors, as well as limited understanding that ventilator support can be painful, expensive, complication prone and emotionally wrenching. Furthermore, there is no guarantee of recovering completely or reclaiming the previous quality of life.

Professor Aasim Ahmad, director master of bioethics program at Karachi’s Aga Khan University Hospital (AKUH), and also the dean and chief nephrologist at Karachi’s Kidney Centre hospital, narrates how six years ago four-year-old Noni was abandoned by her gypsy family at a local hospital’s intensive care unit (ICU) when they could not afford to pay for the usage of a ventilator. She was a toddler and had polio in the cervical region leaving her four limbs paralysed. Unable to fend for herself, she stayed on at the hospital, brought up by nurses working there, and they were still caring for her when Ahmad left the hospital three years ago. “She has the mental intelligence of a person her age but the rest of her body is small and stunted,” Ahmad says. “I wonder what goes on in her mind about how she is. I am not sure if it was a wise decision to put her on the ventilator or otherwise.”

But Noni is fortunate to have had care. If a patient is abandoned by relatives, hospitals are known to have pulled the plug on the ventilator. Dr Nehal Masood, head of the Oncology Department at the AKUH, says the cost of keeping a patient in an ICU is enormous, running up to 40,000 rupees per day at the least. “Internationally there are rules that make it mandatory for hospitals to take care of all patients. But in Pakistan [the relatives’ unwillingness to pay] means that the machine is turned off,” says Masood. “Some patients take a turn for the better and survive when the machine is switched off, others don’t.”

Ethics and obligations of medical practitioners can also add on to the complicated situation. “Relatives will of course take an emotionally-charged decision against advice, but when reality sinks in that the patient won’t recover, they ask us to unplug,” he states. At this stage, medical practitioners say they cannot simply abide by what the family is now requesting. “As doctors, we are bound to operate ethically. They cannot turn around and ask us to pull the plug on someone who will die without the support. When the ventilator supports the patient, pulling the plug is like killing him/her,” says Masood.

At other times doctors have a paternalistic attitude, not providing patients with options and pushing for unnecessary treatment. “We doctors have this great idea that we know best and want to take all measures necessary. Technical knowledge does not translate into emotional understanding. You have to give patients and their family a choice beforehand, and trust me many of my patients understand and do not want to be put on the ventilator in case such a situation arises,” says Ahmad.

He talks of being involved in a case recently where the parents, the father being a physician himself, requested their infant child be taken off the ventilator because they could not see him in pain. “A couple of doctors said the child had weak muscles but was normal and, if given time, would be able to breathe on his own.” Yet the parents decided against the ventilator. “It didn’t imply they wanted to kill the child.”

Masood, therefore, believes such situations can be preempted with effective and improved communication among all stakeholders, most importantly with the patients who are at times not even aware of the diagnosis. “Sometimes patients’ relatives request that I don’t reveal the real diagnosis because they wouldn’t be able to accept the truth,” he says. “This is a problem in South Asia where it is considered unethical and offensive to tell patients they are dying. In the West, [not telling them] is purely unethical.”

Dr Salman Sharif, head of the Neurosurgery Department at the Liaquat National Hospital, who has a long experience of dealing with patients suffering from life-threatening diseases and in some cases having a few months to live, agrees with him. He believes “common sense should prevail” when informing patients and their relatives about the diagnosis and even the prognosis. “If there is a child with cerebral palsy and has an infection in the brain, I state facts to the parents. Similarly with a patient suffering a rapidly spreading carcinoma in his brain. Why prolong their misery when the chances of survival are so poor?” he says.

There is a general consensus that the earlier bad news is broken the more time available for patients and their relatives to make the right decisions. “This could include anything from an older patient making a will to giving crucial advance directives, which could be as simple as whether or not to provide resuscitative measures or refusing ventilator support altogether,” Masood says.

In the West, older patients especially, have the option of making an advance life will, a legal document stating their choice when facing a life and death situation. This is usually made when they are alive and healthy. This document not only spells an individual’s wishes but also prevents unnecessary and unwanted invasive treatment at the end of his or her life which can be exhausting for the patient.

“There is no such concept here in Pakistan and such a document has no legal standing or basis,” explains Ahmad. When a seriously ill patient is unconscious or simply incapable of taking a decision, doctors follow the requests of relatives which often involve an emotional and guilt-ridden response. The relatives usually insist on using ventilator support, Masood says, because they are emotional.

Nevertheless, the issue is so ethically riddled that the family, no matter how emotionally, culturally and financially constrained, will not always take the final decision without seeking advice from elsewhere. Fatwas or religious edicts, consequently, have become a popular resort for families unable to decide on whether or not to pull the plug and when. Ahmad recalls one such emotionally-charged incident that took place six years ago. A young boy with Down’s Syndrome from Rahim Yar Khan was admitted to a Karachi hospital for two cardiac surgeries. In between, his atlas (bone in the cervical region of the neck) subluxated leaving him paralysed from neck down. His brain was functioning, he was fully aware of his surroundings but he could not breathe because his muscles were not functioning. “He was put on a ventilator and could have lived indefinitely on that. But his parents, unable to see him in that condition, wanted him taken off it.”

It was not an easy decision and they did not implement it without religious advice. They sought two fatwas, one from Karachi’s Binori Town madrasah and the other from the Council of Islamic Ideology. “Both stated that human life is sacrosanct, so one should do everything possible to save it but unfortunately when other lives are at stake it was not unwise to take him off the ventilator,” says Dr Ahmad.

Shoaib Alam at the fatwa-issuing office at the Binori Town madrasah says the fatwas issued by his institution in such cases are based not only on the opinion of local clerics but also involve prominent medical practitioners from local hospitals. “We deal with at least four queries each week. Nobody wants their near and dear ones to die but when the costs become too high then they ask for a solution.” Alam explains that the edict on taking a patient off a support system is neither issued immediately nor automatically. “There is literature available with many books written [on this topic].” All these are consulted as well as medical advice on the patient’s condition. “There are seven stages of a patient’s condition and for each there are options. We do not say that the patient should be removed immediately but give the relatives an open option [for each stage].”

As medical technology advances in Pakistan, decisions about life and death become even more crucial. Saving a life is of utmost importance but Ahmad believes that this should not be seen as a deterrent to educating the family of patients about the implications of their decisions. Still, he believes at times it is best to just defer to the relatives’ decisions, especially given the ambiguous ethical and legal provisions in Pakistan concerning such situations. “After many years of practice I have come to understand that you can never fully comprehend the situation faced by a family before making a rash decision.”

Sustaining life

Frequently used terms relating to end-of-life issues in a hospital set-up

(Source: The Merck Manual Online Medical Library)

Cardiopulmonary resuscitation (CPR): An action taken to revive a person whose heart stops (cardiac arrest), whose breathing stops (respiratory arrest), or whose heart and breathing stop (cardiopulmonary arrest).

Code: The summoning of professionals trained in CPR to revive a person in cardiac, respiratory, or cardiopulmonary arrest.

No code/Do not resuscitate (DNR): An order signed by a patient’s doctor stating that CPR should not be performed. It is also called a DNR order and is placed in a patient’s medical record informing the medical staff that no effort should be made to revive the patient by cardiopulmonary resuscitation (physical manoeuvers and shock). A DNR order, however, does not mean “do not treat.” Rather, it means only that CPR will not be performed. Other treatments (for example, antibiotic therapy, transfusions, dialysis or use of a ventilator) that may prolong life can still be provided. Treatment that keeps the person free of pain and comfortable (called palliative care) should always be given.

Irreversible coma: A coma or persistent vegetative state from which the person will not recover.

Terminally ill: The medical state of being near death where there is no hope of cure.

Life-sustaining treatment: Any treatment given to postpone the death of a terminally ill person.

Palliative care: Measures taken to keep a terminally ill person as comfortable as possible.