Last weekend at the conference of the Society for Mormon Philosophy and Theology, Richard Sherlock presented a stimulating paper observing and explaining the complete absence of an LDS casuistry of medical ethics–that is, the absence of a body of literature exploring in a careful, ethically- and scripturally-bound way the trade-offs inherent in the excruciating panoply of choice that modern medicine demands of bereaved families and dying patients. This sort of literature abounds in most other religious traditions, made available to priests, pastors and rabbis as they counsel with congregants staggering through the worst day of their lives; Mormon bishops, on the other hand, rely on their own personal views, experience and inspiration of the moment to shepherd members through the throes. This has been on my mind during the last few days, as I’ve asked myself–as all of you surely have, too–“What would I do if Terry Schiavo were my daughter, my husband?”
My husband John, a physician and scientist, has asked himself these questions, as well, and not just over the past days: after a litle over nine months as a medical intern, he has faced situations ethically (if not legally) analogous to Terry’s. Last night, the final night of his two weeks on the night shift, John didn’t have to start admitting patients until 3:00 a.m., and he took advantage of the unexpected block of time to write some thoughts on the issue. I’ll post them in full here.
Over the weekend the Terri Schiavo situation has been brewing. For those of you who have missed the story you can catch up at CNN, and the New York Times . The NY Times also provides an opinionated review of the case’s legal history here.
The quick summary is that Ms. Schiavo was a bulimic who, following lots of vomiting, dropped her potassium from the normal range of 4 to around 2, causing cardiac arrest. During this arrest she suffered significant brain injury and has been maintained by artificial feeding tubes for nearly 15 years. To my knowledge she has minimal cortical function limited mostly to respiratory drive. Her physicians feel she is in a persistent vegetative state and has not improved since the injury. Tragically, her extended family has been deeply divided on her future. Her parents have relentlessly pursued legal channels to prevent the withdrawal of care while her husband has maintained, through seven years of court hearings, that his wife desired not to be indefinitely suspended in a vegetative state and has sought to withdraw care.
What has interested me this weekend has been the vigor with which the religious right has pursued the maintenance of her artificial feeding. I understand the religious position against abortion at the beginning of life, but I do not understand how Christianity might suggest we are morally obliged to provide all invasive treatment that might prolong life at any cost. In fact, a belief in an after-life, where a benevolent, loving Father in Heaven and deceased family members await to greet a dying person, would seem to lead one not to artificially prolong life, but rather to help dying people pass with dignity and grace to the bosom of their god. If this life is an eye-blink in the eternities, why should we suffer so greatly for a few extra days before succumbing to the inevitable? What will our patients and family members, who we helped or hindered die, say to us when we see them on the other side?
In “The Hour of our Death,” Philippe Aries describes two opposing paradigms of dying in the long history of our response to death. One, originating in Medieval times, he calls “the tame death,” which he idealizes as the knight dying an anticipated death, calmly in the presence of his companions, having made his peace with his people and his god. In contrast is our more modern death, where we are flogged to the bitter end with whatever invasive treatment is required to prolong life and we die in a hospital, painfully poked, prodded and probably intubated.
Recently there has been a shift in the medical and patient-advocate communities toward patient autonomy and away from medical paternalism. Hospice programs have arisen across the country that help patients and family members transition through the difficult journey to death. We have become more comfortable with respecting a person’s desires at the end of life. We have also become less reluctant to trade a prolonged course of inevitable suffering for a treatment course that focuses on comfort and dignity, even if it means foreshortening life.
End of life ethics is complicated to say the least. Few people are comfortable with active euthanasia, where medicines are prescribed that induce death. In contrast, many people are comfortable with passive euthanasia, where treatments are withheld that could delay an inevitable death in favor of providing dignity and pain relief. This can take the form of not performing CPR or cardioversion (shock) to someone who has undergone cardiac arrest and is dead, withholding fluids and nutrition as in the Schiavo case, removing someone from mechanical intubation, or even withholding antibiotics and letting someone with a terminal illness pass peaceful from pneumonia (known in the 19th century as “old man’s friend”).
Let me give a quick example to illustrate the active limits of passive euthanasia. I am a first year resident in Internal Medicine. When I was working in the ICU I admitted an 83 year old, emaciated woman with metastatic breast cancer. She came to the ICU with low blood pressure and cardiogenic shock. We started her on pressors (strong medicines that increase blood pressure) and got an emergent echocardiogram (an ultrasound of the heart). As the echo was being completed she began struggling to breathe and required intubation and ventilator support. I called her family. By the time they arrived, the results of the echo returned. She had a previously known blood clot in her inferior vena cava, which now had extended up into her right atrium and right ventricle. It looked like it was further extending into her pulmonary arteries, although it was difficult to see on the echo. There was no way to treat a clot of this size. With this obstruction in blood flow to her lungs, their function would continue to be too poor for her to manage with her emaciated musculature without mechanical ventilation. With her family, we decided it did not make sense to continue aggressive management. She was unlikely to improve, and given her weak and wasted state, would not be able to tolerate further chemotherapy even if she survived this blood clot. She was actively trying to die. We decided to assist her. Once the family had assembled and said their good-byes we gave her medicine to prevent her from struggling with air hunger and then took her off the ventilator. She did not last long without artificial support. It was a surreal experience writing orders to withdraw care. However, her death was inevitable. It was only a question of how much suffering she would endure before it occurred and this was the best medicine I had to offer.
Please don’t let this thread to break down into a bitter rant for or against the details of the Terri Schiavo situation. As this topic is obviously explosive, try and keep the emotions to a minimum.
My questions are: Does LDS doctrine (particularly our believe in a pre- and post-mortal existence) help us make decisions at the end of life? Does LDS doctrine help you feel more or less comfortable withdrawing or withholding treatment when a family member desires this course? What sources of LDS doctrine can we use to derive principles for end of life decisions? Why is the religious right, and recently Catholicism, so married to artificially prolonging life even at the cost of great suffering? Should Mormons feel compelled to follow? And most importantly, do you have a living will? (Ms. Schiavo would not be in her current situation if she had clearly expressed her desires in writing)
John’s insights as a physician don’t ultimately decide the question, but they show us that the categories most of us take for granted in anticipating our future actions–categories like “active euthanasia,” or “letting nature take its course”–are much messier, bloodier, and more uncertain in the hospital. Nor did Richard Sherlock’s insights from the lecture hall decide the question: a Mormon literature of medical ethics is absent, he argued, because Latter-day Saints are urged to seek personal revelation in these situations; absent a clear impression from the Holy Ghost, he continued, one may turn to the scriptures. But because the scriptures often provide spotty or inconsistent counsel on these matters, they’re best at merely ruling out those options that are totally unacceptable to God; beyond that, there often remains an array of possibilities that would seem to be equally acceptable to God. The choice is ours. So I’m back to where I started: what would I do? Terry Schiavo, in her hospital bed, will never know what reaches of untrodden legal and personal deliberation she has opened to her waiting, wondering nation.