Death panels and Dr. Kevorkian suck the oxygen out of end of life discussions. In a way, framing death and dying in sweeping abstractions like "right to die" and "rationing life" is an easy way to avoid the subject.
Recently, Adams State University, in the remote farming community of Alamosa, Colorado, sponsored a panel discussion: "End of Life... the Practicalities."
Theirs was not high-flown rhetoric.
Four of the six panel members were clinicians: two nurses (including myself), an internal medicine doctor and a hospital pharmacist trained in palliative care.
The consensus was that those facing end-of-life decisions need to protect themselves from the onward rush of technology and bad decisions that lead to uncomfortable outcomes. A detailed presentation of the "Five Wishes"and other "advanced directives" ensued. A seasoned pharmacist, a dedicated hospice director and a well-versed physician urged the audience to think through options with friends and family and to take advantage of the many formats out there to determine ahead of time their individual preferences.
In 1987, 1988 and 1989 -- just getting into the trade as a nursing assistant -- it fell my lot to care for "total care" patients, many of whom had fared poorly in the ICU. Turned and washed up every two hours in bed they would sometimes open their eyes and could occasionally smile or frown. They most often spoke in word salad, if at all. The routine was to get them up for meals with either two strong caregivers and/or a mechanical lift. Very few were weight bearing, almost all were incontinent. Feeding was a charade. Most had lost interest in food and clenched their teeth. With practice, we learned to work a plastic straw in their mouths to get some fluid in them. They had poor swallow reflexes and frequently aspirated. Onset of pneumonia could, and did, often follow. Visits from family trail off. "He's no longer the father I knew."
Any one who would like to spend the last three or four years of their life like this, raise your hand.
Bad end-of-life decisions plague the hospital setting. The rabbi, the minister and the priest took the last train to the coast. Remaining in the hallway for a late night confab are a harried hospital doctor ("a hospitalist") and a family in denial.
"Why don't we just put your mom in the ICU for a few days and see what happens?" are usually the fateful words from the doctor -- preoccupied with a ringing cell phone and a handful of other patients in immediate distress.
We need to get this discussion out into the open.
Our panel took place on the evening of September 9, and, ironically, in the September 9, 2013 issue the Journal of American Medical Association studied "futile" care in intensive care units. Here are their findings, in shortened form (bear with me):
Design, Setting, and Participants To develop a common definition of futile care, we convened a focus group of clinicians who care for critically ill patients. On a daily basis for 3 months, we surveyed critical care specialists in 5 intensive care units (ICUs) at an academic health care system to identify patients whom the physicians believed were receiving futile treatment.
Results During a three-month period, there were 6,916 assessments by 36 critical care specialists of 1,136 patients. Of these patients, 904 (80 percent) were never perceived to be receiving futile treatment, 98 (8.6 percent) were perceived as receiving probably futile treatment, 123 (11 percent) were perceived as receiving futile treatment, and 11 (1 percent) were perceived as receiving futile treatment only on the day they transitioned to palliative care. The patients with futile treatment assessments received 464 days of treatment perceived to be futile in critical care (range, 1-58 days), accounting for 6.7 percent of all assessed patient days in the 5 ICUs studied. Eighty-four of the 123 patients perceived as receiving futile treatment died before hospital discharge and 20 within six months of ICU care (six-month mortality rate of 85 percent), with survivors remaining in severely compromised health states.
Let me put this in plain English: the 104 "futile " cases (out of 1,136 ICU patients) who died went through the tortures of the dammed in high-tech treatment, most intubated with a seven inch plastic breathing tube and tied down so as not to pull this out... and many other invasive lines into most of their orifices. Powerful blood-pressure fluids are sent into the circulatory system to turbo charge flagging hearts and their intestines are flushed with antibiotics that wipe out all bacteria in sight: the good, the bad and the ugly. Most develop bed sores.
The unfortunate 19 patients who survived in "severely compromised health states" would have landed up on a total care wing.
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