Are doctors killing patients or taking life when they withdraw or withhold care? Do families who don’t insist that “everything be done” kill their loved one? Do patients who refuse ventilators, dialysis, etc., commit suicide? For that matter, does a ventilator equal dialysis equal a feeding tube?
Can the patient who refuses all attempts to resuscitate and the family who demands that every effort be made to keep the patient’s body alive even if there is no hope of awareness, both be right?
There’s an old saying that pneumonia is the old man’s friend. If the surrogate decision maker for a patient with Alzheimer’s demands that she be allowed to die while suffering from an easily treatable condition such as pneumonia, but the doctor believes that it would be medically inappropriate to withhold nutrition and hydration, who is right? What if the patient is a child?
At what point does care become medically inappropriate? Who is best qualified to make that determination? Is there a place to say, “This much, and no more?” Is there a point where we say that the last step was where we went too far? And are we doing all this for us, or as care for the patient?
How many events must happen before we “Let go, and let God?”
These are some of the questions raised by the Texas House Committee on Public Health on August 9, 2006. You can watch the full 12 1/2 hour archived video at Texas Legislature Online. (Free RealPlayer necessary) I recommend moving the cursor to 2:20/12:38 and watching until 4:10/12:38. If you only have 30 minutes, Dr. Bob Fine, MD, is very informative (3:12 to 3:40) as a physician who helped develop the practice of hospital clinical ethics in the U.S.
The only question allowed under Section 166.046 of the Texas Advance Directive Act of the Health and Safety Code should be whether or not medical treatment is “inappropriate medical care” for the patient. Section 166.046 is an attempt to allow clinical judgment by doctors carrying out Advance Directives, for oversight of doctors by hospital ethics committees and for disagreements between doctors and the patient or surrogate by allowing time for transfer to another doctor who does not believe that the treatment is medically inappropriate.
Examples of medical procedures and technology that are not medically appropriate care are sometimes clear-cut, and sometimes professional judgment or conscience is needed to make the distinction. The same medicines and procedures used to relieve pain and symptoms carry known, but unintended side effects. Something as simple as oxygen by nasal canula or face mask can sometimes blunt a patient’s drive to breathe and force a decision on whether or not to use a ventilator.
At the end of life, even “life sustaining” treatment such as pacemakers, ventilators, dialysis and tube feedings may not always be medically appropriate care. Doctors and family members are faced with decisions about whether a given technology or procedure is life saving or only prolongs dying in patients.
Today, we have the ability to keep the body alive for a few days, even after the brainstem is dead. This is not bad for the patient, because if the brainstem is dead, the part of the brain that could be aware of pain, is also dead. It is not good for the patient either, for the same reason.
If the patient is not brain dead, we can keep them alive much longer because signals from the brain help us maintain blood pressure and heart rate.
In order to keep the heart beating and the lungs breathing on the ventilator, we have to add IV feedings and do frequent blood draws, maintain arterial blood lines to follow the oxygenation, nutrition and blood pressures. Medicines to regulate blood pressure may actually decrease blood flow to the fingers and toes. The patient who is not brain dead or in a coma will require some level of sedation until we are able to create a tracheostomy. Sometimes, we have to paralyze patients and then completely sedate them to make the ventilator tube in the throat tolerable.
When dialysis is needed over months and years, we don’t have the ability to prevent the side effects. Patients begin to have “pathological” fractures in their arms, legs, and ribs, simply when they are repositioned in their beds. If the patient only communicates with us to tell us that he or she is in pain, should we continue to hook the patient up to the dialysis machine three times a week because his surrogate insists that “everything” be done? What should we do when he has a heart attack, a stroke, or seizures and the family insists on chest compression, ventilator support or a surgical procedure to place a permanent feeding tube? How about when our efforts keep a patient in physical or mental pain that is uncontrollable – when the doctors cannot control pain or (as in the case of my mother)the patient can’t process stimulation as anything but excruciating pain?
Next: what can we do?
Edited November 29, 2007, to add labels.