Some day, hopefully far off, I wish to feel a gentle, final goodbye kiss on my cheek from each member of my family. I want to know those are loving kisses of my impending death, that we are of one mind about my passing, and there is peace of that mind.
Most of the 1.5 million-plus Americans who will die this year of chronic diseases will not die that way. The majority will die in hospitals despite preferring to die at home, with far more care in their last several months of life than they really want, and with way too many medical devices stuck in them for way too long.
I don’t intend to let that happen to me. I intend to prevent confusion about the care I want when advanced illness has laid the track to my death, or when I am too frail to survive many more train wrecks of acute illness, such as pneumonia. I intend to make sure my family, physicians and nurses don’t contravene my wishes about the care I want toward the end of my life, so that I slip away remembering kisses on my cheeks, not tubes down my throat and the clinical cacophony of intensive care.
In order to do that I will need something called Physician Orders for Life Sustaining Treatment, or POLST. POLST is a series of physician orders specifically designed to tell my caregivers what care I want under certain circumstances toward the end of my life. (Sample POLST are available from several websites, including capolst.org. Many physicians are unfamiliar with POLST — there is material for them online at polst.org.)
POLST are emphatically not an advanced directive, or DNR (Do Not Resuscitate) orders. In fact, neither of those others tools is adequate to the task of ensuring my care late in my life will reflect my wishes.
DNR orders are to end of life care what a snowplow is to neurosurgery: a hopelessly blunt tool for accomplishing the delicate task of telling my caregivers what to do in specific situations late in my life. They are meant only to address the question of whether I want my heart restarted if it should stop, and whether I want to be put on a breathing machine if I cannot breath on my own — no more, and no less. DNR orders say nothing about what other kinds of care I do and do not want, but are widely misinterpreted by patients, families and health care professionals as saying much more.
DNR orders, while widely used in American hospitals and nursing homes, are the source of tremendous confusion about what patients really want for their care. Arguments among caregivers about what DNR orders mean are commonplace, because some caregivers think DNR orders mean “just keep me comfortable,” while other caregivers in the same hospital understand correctly that DNR orders only apply to the question of whether the patient wants CPR. Some physicians think DNR orders mean they should not do surgery on the patient because surgery is an aggressive treatment inconsistent with the intent of a DNR order, while others feel there is nothing about DNR orders that rules out surgery or other aggressive treatments.
Bottom line for me: DNR orders are so widely misinterpreted that no patient or family member should accept them without seeking specific clarification from caregivers in that institution as to what the orders really mean. Unfortunately, if the patient is then transferred to another institution, the same clarification should be sought again, because different organizations interpret DNR orders differently. In fact, we should consider writing a DNR order for DNR orders, and use POLST instead.
Nor are Advanced Directives up to this task of ordering the care we want. They are not orders and therefore may not be binding on all caregivers. They provide guidance about my care but not explicit instructions about what I want for care in given situations. Advanced directives must be interpreted by caregivers and family members, while POLST are quite specific and less open to interpretation. Advanced directives may not be immediately applied to my care. All of us over the age of 18 should have an advanced directive; POLST are meant only for those of us with advanced and serious disease, and/or persistent and severe frailty that makes us highly vulnerable to acute, life-threatening illnesses.
The American health care system has gotten so good at keeping people alive it needs help allowing them to die well. POLST is that kind of help; don’t leaving this world without it lighting the way to your final path for your caregivers.
Erik Steele is the former chief medical officer of Eastern Maine Healthcare Systems. He now works at Summa Health System in Akron, Ohio.