DISCUSSION OF THE ABOVE ADVANCE DIRECTIVE
Bad Death/Dying Poorly
For me a bad death is one in which the process of dying is turned over to the medical team, almost guaranteeing that the dying occurs in a hospital or care facility, the final care provided by strangers in an alien environment. More and more people in this country are choosing to die at home, but still
the great majority die in a hospital or nursing home. Care in this scenario commonly involves machines, the time of the dying dependent on someone else's decision. Dwindling too often describes this clinical picture. When dying would be merciful, prolongation of our existence (this is not life) is impersonal and lacking dignity. Unfortunately, this is what most U.S. doctors are trained to do. Often, their efforts to extend life results in additional suffering. Most of us would not choose to die this way.
Good Death/Dying Well
Paramount to my definition of dying well is dying without pain and not alone. Further improvement would include being surrounded by family and friends and dying in familiar surroundings (especially home). Icing on the cake would be getting to settle any differences with those in attendance, to say “I love you,” and to say “goodbye.”
Can a patient die well in a hospital? The answer is “yes” if most of the above conditions are met for the patient. Marie was such a patient, a lovely 90-year-old lady who fainted following persistent lower intestinal bleeding. The usual investigative procedures and tests failed to identify the site of bleeding, which could have been anywhere in the intestines. Her attending physician and her gastroenterologist wanted me to operate to stop the bleeding, ignoring the possibility that I might not be able to find the source. I explained the options to Marie and her family, none offering a guarantee of success. Marie told me she had lived a good life, and as one of the few survivors left from her generation, she was not interested in heroics. Marie declined exploratory surgery and further transfusions, having learned from me that she would die comfortably from blood loss. I could guarantee her that she would experience no pain. Her family supported her decisions. The other doctors resigned from her case, but not before criticizing Marie and documenting that they felt I was wrong not to push her to have surgery. Twelve hours later Marie died peacefully and comfortably in her sleep with her loved ones at her bedside. Her entire family was grateful that she had not had an operation. Her story exemplifies dying well.
The list commonly includes IV fluids, nutrition, mechanical ventilation, drugs such as heart and blood pressure stimulants and antibiotics, CPR, dialysis, and surgery. If a person is adamantly against the nonsurgical life support mentioned above, then that same individual should also refuse emergent/urgent surgery that would be considered life saving. Surgery would too often prove fatal without the other heroic support. For instance, many patients following anesthesia need short-term ventilator support. Similarly, patients whose food intake has been marginal before surgery will need nutritional support afterward if unable to resume eating promptly.
Today, with modern transport systems that get patients to the hospital quickly, and with excellent doctoring and nursing care, patients are surviving graver and graver catastrophes that not that many years ago would have been fatal. This says nothing about the quality of life of the survivors, many doomed to live with horrible disabilities and lifelong dependencies.
For the individual who has decided that he would refuse any heroic support that might delay his dying, he would do well to avoid going to the hospital or dialing 911. Both agencies are in the business of resuscitation and of extending life.