Death is not the enemy. We all die.
The enemies of patients and physicians are premature death, disease, disability, pain, human suffering.
I believe that all people deserve a death with dignity and without pain. Palliative care is the right mode for as many as 80% of all Americans who will die of chronic progressive incurable diseases. Eighty percent of those state that they do not want to die in a hospital and especially not in an intensive care unit.
Yet, that is exactly what does happen to so many Americans, often against their will. Some knowledgeable people have even designated the common American practice of aggressive intervention in patients who are truly hopelessly ill as a form of assault or torture.
Hospice at the end of life is also right for many. The problem is that too many patients and their physicians take too much time to make the decision to move to palliation or hospice.
Of course, some individuals really do want to fight hard for their lives for as long as possible, no matter what the adverse effects are on them and their families, and the costs involved.
The main key to getting it right for the patients with incurable, chronic, progressive disease is to have a conversation, call it counseling, with their physician, about how to handle the end of their lives.
We all know, and the literature supports, the frequent failure of institutions to actually follow the expressed wishes of patients as represented in DNR orders, living wills, and advance directives.
We in medicine need to relearn and practice an obvious truth. Patients value their physician’s opinions and recommendations. Nursing staffs, including those at nursing homes, follow doctor’s orders. If the doctor and the patient (not only an administrator, nurse, lawyer, ethicist, or social worker) agree that when it is time to die, no emergency rooms or hospitalizations, no feeding tubes, no gastrostomy, no IV fluids, no antibiotics — but all the pain relievers necessary to maintain a dignified and pain-free state. Then nature can take its course.
That explicit agreement should be placed in the patient’s chart, not in an administrative or legal office; then, the patient’s wishes will likely actually be followed.
One doctor; one patient; one moment; one decision. Let it be a shared decision, informed by best evidence and considering physical, emotional, and financial costs.
George Lundberg is a MedPage Today Editor-at-Large and former editor of the Journal of the American Medical Association.
Originally published in MedPage Today. Visit MedPageToday.com for more palliative care news.
