A reader responded to September's column [“Son's plea to prolong life at any cost sparks ethical quandary, “ ACP Internist, September 2008]. The column addresses the dilemma faced by health care providers when the family of a dying woman wants to continue life-sustaining medical treatment despite there being no reasonable hope for recovery.
A reader's letter
Douglas Van Houten RN, wrote: I am the co-chair of our hospital's Bioethics Committee and we often have this issue referred to us. In 25 years of critical care nursing I have seen the issue over and over.
A concern that I have about these “futility” cases, as with the example in your article of the 81-year-old woman in the ICU, is “futile to whom?” It is often too easy to look at these cases from our medical position and to give less credence to different, if not cultural or unusual, positions of the layperson. Here is an example:
A 41-year-old East Indian (Hindu) woman was admitted to our ICU with terminal breast cancer and metastases to the lungs. Somehow, we were able to wean her from the vent and extubate her. A week later, she decompensated and seemed to need to be intubated again. The pulmonologist said he would not re-intubate her because she was terminal and going to die. He said we should provide pain meds and allow a natural death in a hospice room. The staff called our Bioethics Committee.
After a brief meeting with the patient and family, it turned out that our medical goals were different than the patient's goals. Our goals were to make her comfortable with opioids and let her go peacefully. Her goals did not include opioids and pain relief. She said, “I can tolerate discomfort, but my Hindu religion discourages medicines that cloud the thinking.” She finished by stating her main goal was to be alert, even if intubated, so that she could spend more time with her two teenage boys and try to continue to prepare them for life without their mother. These goals illuminated, the patient was intubated and we allowed the boys to be at the bedside for long periods where she wrote notes to them. She died two weeks later rather than in a few days if not intubated. She was alert up until the very end.
Your article does make note of making attempts to “achieve a patient-centered goal,” but what if the patient's goals are not as easy to appreciate as the patient in my example? What if a patient said, “I have always been a fighter. I have always beat the odds. I want full-court press until my heart stops beating.” What would you say to a person who made it clear that even continuing on life support in a vegetative state is good enough?
I agree that clinicians cannot be compelled to provide what they consider to be “bad medicine,” but these cases become difficult for institutions when the treatments don't meet the average person's sense of “good medicine,” but patients or families put forth autonomous commands to fulfill their goals for care. Also, medical decisions to not start dialysis or surgery are easier to follow through with than suddenly telling the family “the chance of any recovery is remotely unlikely, and continuing the fluids, pressors and other treatments is simply inhumane.” Somehow I think we need to keep meeting with the patient/family and attempting to clarify what the goals are and why surrogates insist on seemingly pointless care until consensus can be reached.
Dr. Forrow's response
I deeply appreciate Doug Van Houten's case description and general comments, and hope they will spark more from others. It is regularly the case that after further exploration of patient-centered goals, physician and nursing staff at my hospital realize that continued life support in fact does have important value from the patient's perspective, and thus they become willing to administer it.
We have had Holocaust survivors for whom anything short of fighting aggressively for life until the very end would be a betrayal of a commitment they made to cherish life itself under any circumstances. But while a patient-centered assessment of goals should always come first, there must be limits—the values of the health care professionals matter, too. Our policy is designed to ensure that no physician or nurse is ever forced to administer a treatment that s/he believes is ineffective or harmful.