“Extremis” means the crucial point before death.
It’s measured by the level of stress and the length of time patients suffer as they die. You often hear people express consolation to the family with the kind words “at least he didn’t suffer” or “she died with dignity.”
In the short-film “Extremis,” Dan Krauss brilliantly depicts how patients endure tremendous suffering and loss of dignity through the efforts of well-intentioned physicians and family members.
The documentary begins with Dr. Jessica Zitter, an intensive care and palliative physician, who is trying to determine a patient’s wishes. The anonymous patient can’t speak and appears to be incompetent. Dr. Zitter’s creative attempts include having the patient scribble answers on a clipboard and spell out words in the air. These efforts are futile and border on being cruel. Is it ethical to question patients in extremis? Why ask a patient anything when the physician knows the appropriate answer?
The documentary allows the viewer to peek in on several ICU patients at Highland Hospital in Oakland, Calif. Two are on life support with family members at their bedsides.
The ICU is often described as a place of limbo. Strong doubts exist as to whether any of these patients will recover, yet hope abounds. Hope, however, comes at a cost – the amount and time a patient has to suffer and the increasing risk that a patient’s dignity will not be respected. Subjecting terminal patients to this level of care appears more like punishment than palliative medicine. Yet, this has become standard practice for end-of-life care. The documentary should leave viewers frightened and shaking their heads – saying, “ain’t it a shame – someone ought to do something.”
Dr. ZItter offers a resounding story about a nurse who challenged her practice of medicine. Dr. Zitter was inserting a large IV into the neck of a critical patient when the nurse standing in the doorway looked her straight in the eyes and shouted, “Call the police. The doctor is torturing the patient.” The bombshell that saving certain lives is criminal gives viewers a wake-up call. The ignorance and bullying that exists in the healthcare care system is overshadowed by the claim that “This is for your own good.”
Patient autonomy and self-determination allow patients to formulate a personal statement, “Someone ought to do the right thing for my own good.” A self-respecting person completes an advance directive. An intuitive husband understands how to love his wife as he does himself. An astute physician has the wisdom to know the difference between torture and respect.
Having to contend with God, physicians, and family members in the moment of extremis raises issues the patient needs to address well before admission to the ICU.
A person who wants to be responsible for their own their end-of-life care must do so when they are of sound mind, body and spirit. What to think, do, and feel after watching “Extremis” can leave you feeling helpless. But consider it a valuable lesson.
In this four-part series over the next three issues of Dr. H’s Clipboard weeks, I’ll discuss a holistic approach to “Extremis.” You’ll learn about mindful considerations, practical considerations and spiritual considerations that dictate how the patient should be treated, or left to die.
Being of sound mind, body, and spirit insists that you are prepared for the inevitable. Believing that you are invincible is foolhardy and adds to pain and suffering. Only you can guard against the loss of dignity that so often occurs during extremis. Take the steps necessary to make sure that you receive compassionate end-of-life care through advance care planning.
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Mom spends most of her days doing enjoyable things like “nothing.” She gets up early in order to be dressed and ready when breakfast is served in her assisted living apartment. After my father died, she became used to this additional attention even though she is able to shuffles to the dining room for lunch and dinner. She faithfully takes her medication after breakfast, straightens the corner table next to her recliner and is now good for the day.
Prior to taking her to dinner to celebrate her 90th Birthday, I walked into her apartment and caught her napping. She could barely sleep at night before the age of 85. She now naps three times per day. She was delighted to show-off new shoes that made her feet look dainty and felt comfortable – “I feel like I am walking in slippers.” She was quick to hike-up one pant leg and reveal how sleek her ankles appeared in the tanned support hose, following the increased dosage of her water pill.
While at her birthday dinner, Mom’s eyes lit up when the server inquired if anyone cared to have a cocktail. As she normally drinks Root Beer when taken to lunch, Mom’s birthday was motivation for her to go for the jumbo-sized Texas Margarita. Although it only took a few sips for the alcohol to reach her toes, this provided a great photo-op. My Mother, “the Immaculate Mary”, could no longer defy “depravity” with age.
I learned that she no longer ate everything on her plate and refusing to eat something new, like Brussel sprouts, had become acceptable. While exercise classes were conveniently being missed, walking and tumbling have become her new routine. Her priest has pointed out that her attendance at the monthly Mass needs improvement. I thought my mom lost it when she failed Grieving 101. She could not remember all the stages of grief and was admittedly glad that my dad was at peace. She seemed eager to join him.
When asked if there was anything significant to her life, she was speechless. She neither wished to dwell on the past or express gratitude. I wondered if aging gracefully had something to do with not talking about sacrifices as being successes. That might be viewed as boastful and perhaps her idea of a cardinal sin. Redemptive suffering might well have been her ticket to paradise throughout life. And believing that she actually had a good life might risk her salvation. Aging gracefully is standing strong in your conviction.
My mother may not be boastful, but I can still brag about her accomplishments. Her claim to fame was being college educated at a time when women rarely completed high school. She became a medical technician, meeting the high achievement of being “registered.” To this day, the password that unlocks her computer is not a wedding anniversary or child’s birthday, it is the random number given to her by the medical registration board. She carries this honor as a cherished memory. Becoming her own person is an everlasting lesson on how to age gracefully.