Death | Artificial Life Support | Decision-Making
Life support can be painful, expensive, complication prone and emotionally wrenching and there is no guarantee of recovering completely or reclaiming the previous quality of life. This article focused on the ethical, legal and religious issues involved in providing life support and end-of-life decision making.
With a limited number of artificial life support machines and a rapidly expanding population in Pakistan, there is murky understanding of ethical issues involved in end of life decision-making. As one spoke with ethicists and practitioners from different medical specialties in Karachi involved in taking care of terminally ill patients as well as those with poor prognosis, numerous reasons were highlighted. But most important was communication between patient, surrogate decision-makers and physicians.
Professor Aasim Ahmad, former Director of the Master of Bioethics program at the Aga Khan University Hospital (AKUH) and Dean and Chief Nephrologist at the Kidney Centre Hospital, recounts the case of a young paraplegic girl who was abandoned by her family at a local hospital’s intensive care unit (ICU) when they could not afford to pay for maintenance of life support. “She’s around nine years old but was a baby when she was admitted there. She had contracted polio which ascended till her cervical spine and left all of her limbs paralysed,” he says.
Abandoned by her family and unable to fend for herself, she would stay at the hospital, tended to by the nurses.
“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,” Dr Ahmad concludes.Dr Ahmad is a consultant nephrologist and bio-ethicist.
“She has the mental intelligence of a person her age, but the rest of her body is small and stunted,” Dr Ahmad says. “I wonder what goes on in her mind about how she is. I am still undivided about whether it was a wise decision to put her on the ventilator given her quality of life and subsequent circumstances.”
Her case is exceptional in that the hospital staff took over her care, but in other instances this is neither a reality nor a possibility. It is not unheard of that life support has been withdrawn if patients were abandoned by relatives.
Dr Nehal Masood, head of the Department of Oncology Department at AKUH, says the cost of keeping a patient in an ICU is enormous, running upwards of PKR 40,000 rupees per day (USD$400).
“In developed countries, there are clear guidelines that make it binding for hospitals to take care of all patients. But in Pakistan [the relatives’ unwillingness to pay] means support can be withdrawn,” says Dr Masood. “Some patients take a turn for the better and survive, others are unable to.”
Personal ethics and obligations of medical practitioners can further complicate decisions.
“Relatives will of course make an emotionally-charged decision against advice, but when reality sinks in that the patient won’t recover, they ask us to unplug,” Dr Masood 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 actively taking their life,” explains Dr Masood.
At other times doctors adopt a paternalistic attitude, not providing patients with options and pushing for unnecessary treatment.
“We doctors have this tendency to think that we know best and want to take all measures necessary. Technical knowledge does not equate to emotional understanding. You have to give patients and their family a choice. And trust me many of my patients understand and do not want to be put on the ventilator in case such a situation arises,” adds Dr Ahmad.
He provides another case where the parents, the father being a physician himself, requested their infant be taken off life support as they could not bear to see him in pain: “It in no way implies that they wanted to kill the child.”
Dr Masood believes such situations can be pre-empted with effective and improved communication among all stakeholders, most importantly with 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 Department of Neurosurgery at Liaquat National Hospital, who has extensive experience in dealing with patients suffering from life-threatening diseases with just 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?” Dr Sharif 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 clearly described 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.
“The concept of an advanced directive does not exist in Pakistan and such a document has no legal standing or basis,” explains Dr Ahmad.
Not surprisingly, fatwas or religious edicts are a popular resort for families unable to decide.
Dr 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 hospital in Karachi 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 was unable to 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. The family approached Karachi’s Binori Town madrasah and Council of Islamic Ideology. “Both the fatwas 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.
“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?” states Dr Sharif.Dr Sharif is a consultant neurosurgeon.
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 Dr 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,” he concludes.
First published in the April, 2011 issue of the Herald.