One of the big dilemmas in medicine when it comes to the very sick is the choice between the quantity of life and the quality of life. There are no established rules about what constitutes a minimally acceptable quality of life. However, death as an endpoint to life is well established. The problem arises when death can be delayed but at significant cost in terms of medical resources and often at a greater cost to the wellbeing of a person.
It is only a few decades ago that the concept of brain death became established as a medical and legal entity. The need for transplant organs, especially hearts, was an important impetus for this development. I still remember a time when after major surgery if a patient became unresponsive, every effort was still made to keep the person ‘alive’.
But today, absence of brain function as evident by lack of response to outside stimulation or spontaneous purposeful movement and neurological examination including an electro encephalo-gram (EEG) that shows no brain activity lead to a diagnosis of brain death. For legal purposes the person is dead and if appropriate, the organs of such a person can be ‘harvested’ for transplantation.
There is an in-between situation that is quite difficult to resolve. That is of what is called a ‘chronic vegetative state’. These are persons that have some brain function and may respond to pain or other external stimulation but make no purposeful movements; cannot communicate or make appropriate responses to attempts at communication and are just being kept alive through extraordinary medical means.
After a period of time often extending into many years, if no improvement occurs in such persons all medical steps at keeping them alive are stopped. This usually occurs only after next of kin make such a request or if the hospitals responsible for this care go to court to get an order to stop care. However, no basic determination is available as to when medical support systems should be discontinued in such a person.
The dilemma I mentioned at the beginning is when we come to persons that have advanced and incurable disease that makes their lives ‘miserable’. But they are fully aware and intellectually active. The question in such people then is how great effort should be made to keep them alive? And if in a patient with advanced cancer, is the prolongation of life even by a few months an acceptable medical endeavour?
Stephen Hawking, a brilliant scientist died recently. For the last few decades he was severely disabled and limited to a wheelchair, unable to speak or write and with extremely limited physical function. Still his mind was fully functional and during the time that he was so disabled he travelled all over the world, participated in scientific meetings, ‘wrote’ books and made important scientific discoveries. His life over the last few very intellectually productive decades that essentially feed into the idea that a person that is intellectually alert and wants to live should be provided every chance to do so.
The reverse side of this coin is when an intellectually alert person suffering from an incurable disease where the means to prolong life are both uncomfortable and probably not very successful should be able to stop medical interventions and be allowed to die in peace? It would seem that the answer is an obvious yes to such a request from a sick person. But it is not as simple as that.
A lot depends on how optimistically medical options are presented to the very sick patients and their families. Before I go any further, I must make it clear that I am not talking about the end of life situations where a person is being kept alive through advanced life support methods. My purpose is to explore situations like those of Stephen Hawking or of Jimmy Carter, a former United States president. Carter was found to have cancer that had spread to his brain almost three years ago. He has had intensive treatment and is still fully functional at the age of ninety three plus.
It might be said that people like Hawking and Carter are exceptions. That is true but even so if a sick person has a chance to continue living and functioning at an acceptable level even if for a few more months or so, that person should be offered that chance. Of course here an important issue raises its ‘ugly’ head. That is the question about the cost of treatment. Many newer methods of treating cancer and other chronic disease are extremely expensive.
Even in countries where most people have some form of medical insurance, many of the latest types of treatment are not yet accepted for payment. That of course brings up the question that do only the rich or the well-connected deserve such treatment? Sadly, even in the developed world there exist medical conditions that favour the wealthy.
So, as a physician it is easy for me to say that every person that can benefit should receive treatment. Of course here a personal bias also comes into play. Doctors make a living by treating patients. As such I might support the idea of providing the latest and the most expensive treatment for all patients because that is what I do for a living. The presumption is that most well-trained and knowledgeable doctors will offer only the most appropriate treatment for their patients. But then as is said, never ask a barber if you need a haircut.
As I said above, terminating life support in persons in a chronic vegetative state is difficult and runs into religious as well as ethical problems. More difficult is the problem of those persons that have incurable and disabling problems that are painful but death is not imminent. As I said in the beginning, the choice then is between the quality of life and the quantity of life.
So far I have come down primarily on the side of quantity as the more important value in a person’s life. But if the quality of life has become unacceptable for that person then how much longer and how much more should that person suffer? And as physicians the big question is also whether we have a responsibility to end such prolonged and incurable suffering if we can? I know what I would do for myself in that situation but can I offer that option as a medical recommendation.
Every few years the question of doctor assisted suicides comes up. The last doctor (Jack Kevorkian) that openly went around assisting suicides in the United States ended up in jail. However, because of him the concept of ‘euthanasia’ or letting people die comfortably if there is no option has become more acceptable. The medico-legal problem is the difference between letting somebody die and assisting them in committing suicide.
Yes, assisting suicide for a terminally ill person might seem an acceptable alternative and I am sure many physicians taking care of the very sick have nudged their terminal patients into the hereafter. But it is not yet an openly acceptable form of medical intervention.