I was in my late 40’s before I saw someone die for the first time. I subsequently learnt that this is not unusual. In the first half of the last century most people died at home surrounded by family members. Now, most of our adult life passes without personal contact with someone who is dying. Most people now die in hospitals and often in intensive care units, isolated from family members by screens, IV stands, tubes, wires and a bewildering variety of life support machines. The result is that we, as non-professionals, have lost our knowledge of the physical, psychological and spiritual aspects of death and dying. Set this situation against the background of diverse and often conflicting political, medical, financial, and cultural issues and it is not surprising that we have a sub-optimal situation, to say the least.
Technology has transformed many formerly acute conditions into chronic conditions, where patients die very slowly. It is this relative success that has changed the medical profession’s view of death from something that is natural, and a part of life, to something that has to be fought, and if possible, vanquished. The generalist concerned with the needs of the whole patient has been replaced by the specialist, whose duty is to cure the patient, if necessary, one organ at a time. This is more than just semantics. A heart attack at 65 is different from a heart attack at 85. The former represents an illness that surgery may be able to cure or at least provide some additional years of quality life. The latter represents the body’s way of saying that life has reached its natural limit. In the former case aggressive surgery may be justified, in the latter case it is hard to see how it can be justified.
A close family member of mine was diagnosed with an advanced stage cancer. Without sufficient discussion about what aggressive treatment would mean for someone who was already weak and had only a small chance of surviving, the physician recommended chemotherapy. Instead of dying peacefully in her own home, surrounded by friends and family, she died scared and alone in a hospital, suffering the effects of chemotherapy poisoning. More importantly, she was denied the opportunity to take care of her business of dying – tying up loose ends, saying things that needed saying and bringing closure to her life while surrounded by her loved ones.
There is some hope for change, as a natural dying movement is gaining ground. However, the basic dilemma remains. How do we, as a society, find a way to get physicians just as concerned with the patient’s quality of life as they are with finding new technologies and therapies to extend the patient’s life? Doctors don’t always listen to patients’ and families’ wishes. End-of-life policies are implemented differently state by state, hospital by hospital, doctor by doctor and person by person. Furthermore, laws and cultural mores have not kept up with the way dying has changed in such a short time. There is no consensus about when treatment makes sense, when it harms the well-being of both patient and family and when treatment should stop.
“Where is the life we have lost in living? Where is the wisdom we have lost in knowledge? Where is the knowledge we have lost in information?’ T.S. Eliot