To Live, and Let Die:
Terminating End-of-Life Agonies
Two books prompt thoughts of self-directed "exits."
This Valentine's Day, those of us who are getting on can give the gift of clarity by ameliorating those end-of-life agonies that can be ameliorated. Well-considered directions to a healthcare proxy, along with stipulations in a Do Not Resuscitate election, can be, in their way, "pro life." Of course, for each of us "life" means different things, has different qualities. But in a life-altering circumstance, an advance directive can be a gift of love for loved ones -- can be, in a way, "pro love."
Two of the most notable books published in the U.S. in 2013 "trouble" readers with medical, ethical, moral, emotional, psychological and legal struggles that arise when a loved one is succumbing to insidious pain and irreversible incapacity.
Five Days at Memorial: Life and Death in a Storm-Ravaged Hospital
With prodigious detail (extraordinary sourcing along with name overload) Pulitzer-Prize-winning investigative chronicler Dr. Sheri Fink charted what happened at Memorial Medical Center, in New Orleans, in August 2005, during and immediately following Hurricane Katrina. The doctors and nurses "held hostage" by the winds, flood waters and ominous reports of criminal maraudings were not treated kindly by some patients' kin, by some in the media, and by some lawyers.
Sensational media coverage, the pursuit of indictments against a dedicated physician and her staff of equally dedicated nurses, and the money lawsuits (alleging mistreatment, withdrawal of treatment, and euthanasia) could make a reader ill; made me angry.
A hospital going inoperable, flatlining
In August 2005, Hurricane Katrina's winds and flood waters knocked out electrical and communications systems. Without air conditioning and the wherewithal to run heart monitors, IV pumps, ventilators and dialysis machines, the doctors and nurses who stayed on at Memorial Medical found themselves in no-win situations. Patients and caregivers were hostage to inexplicable building-design flaws, municipal disarray and government ineptitude.
A reader can surely appreciate the agony of adult sons and daughters whose nursing home resident parents and grandparents were transferred to Memorial. But a reader must also appreciate the agony of the nurses who stayed on at the hospital for days without food, water, air-conditioning and without contact with their own families and loved ones; stayed on, in the air-fouled water-contaminated darkness, without the capacity to preserve lives.
Nurses bore the burdens
Memorial nurses were not responsible for the vast government incompetence (and irresponsibility) that failed to anticipate evacuation difficulties and failed to coordinate emergency rescue operations.
Memorial nurses didn't design the hospital building; didn't install generators, fuel pumps and transfer switches at ground level in a section of New Orleans prone to flooding in a city with a distinct hurricane history.
Memorial nurses didn't construct the "access" to the hospital's outmoded helipad in such a way as to make the landing platform accessible only by an elevator that relied on emergency power from generators installed in rooms apt to be flooded in a storm.
Sheri Fink does credit Memorial nurses with intelligent and compassionate use of dwindling supplies and barely-operable equipment (hand-pumping ventilators when power was gone). Dr. Fink does relate the nurses' travails as they were interrogated and threatened with prosecution, loss of livelihood and even liberty.
Yet I found myself becoming increasingly angry with those family members, politicians, plaintiffs' lawyers ("coffin chasers") and headline writers who expected the nurses (who stayed on to work under such difficult circumstances) to somehow perform life-extending and life-saving miracles -- especially as to patients whose lives had already been extended beyond what some would judge (what I would consider) useful breaths.
Admittedly, this can be read as promoting assisted suicide, and countenancing euthanasia. Can an advance directive provide for "mercy killing" by defining what is, and what is not, a "useful breath"?
So there you have it: What should be done with those who are in ICU units when those ICU units are no longer able to provide ICU services? What should be done with those ICU patients who cannot be evacuated from those crippled ICU units? What should be done with those patients, in non-functioning ICUs, who have signed Do Not Resuscitate directives?
The Daughters of Mars
Putting aside an ending whose trickery seems bungled (unlike Ian McEwan's eclipsing coda to his elegant and vivid Atonement), Thomas Keneally's novel does convey a vivid sense of the medical dangers and disasters of World War I. Through the lives of two accomplished and courageous nurses (the young Durance sisters), Keneally delivers accounts of 1915 to 1919 nursing travails and heroics.
All through their arduous battle-zone assignments -- even as they witness so many men damaged beyond retrieval -- the sisters continue to agonize over their respective solutions to their mother's pre-War terminal-cancer sufferings. Their guilt can make a reader sad; made me contemplate.
Just prior to their departure for the makeshift surgeries of World War I casualty-clearing stations and field hospitals, the Durance sisters see and hear their beloved mother contend bravely with cervical cancer that had metastasized and was inexorably proliferating.
As registered nurses, both sisters realized what the x-rays showed, understood the doctor's concerns and knew their mother was understating her pain to them. "They knew she was secretive about the scale of her bleeding and the urine coming out of the wrong opening." They heard her "choke down" her groans.
"Glowing with pride" in her daughters' accomplishments, but "hollowed by pain," brave and reticent Mrs. Durance "confessed, one way or another, to agony" for "by night, the cancer owned her."
The Durance sisters (both registered nurses), each in their own 1915 surreptitious ways, took measures to "bear away their mother's disease and the fuss of enduring all useless treatment." Each sister, in her own secretive way, took measures to "reach deep into" their mother's pain-wracked body to "halt the mechanism of agony" -- to bring about a merciful "mortal quietness."
The novel's descriptions of Mrs. Durance's "fiercest anguish" had me thinking back to that metal-barred hospital bed in which my dear mother curled up in shriveled agony. She had stoically endured cancer and bone-crunching arthritis, which had her sob pleas (to God; to any one with the power of relief, release and deliverance) that she be "taken."
She was entitled to some mercy, wasn't she?
Her death came "naturally" -- and that process pained me.
Unlike the Durance sisters, I had no wherewithal to provide my mother with a reprieve, a release, a deliverance from pain and pointless suffering -- a calm exit.
If it had been in my power, and within my competence, I believe I would have been tempted to do what the Durance sisters undertook to do. If my mother had been at Katrina-ravaged Memorial Medical, I might have countenanced the decisions that were allegedly made by a doctor, with the reluctant assistance of two nurses. But I have to acknowledge that the first chapter of The Daughters of Mars is titled "Murdering Mrs. Durance."
The gift of forethought
The pondering passes on to me: Will I have the courage of such a conviction? Will I have the courage to relieve my beloved son and daughter-in-law, an attending physician and attentive nurses, of having to witness the end-of-life agonies that may be my inheritance? Will I have the courage to spare them witnessing agonies that may be in my power to obviate?
In Five Days at Memorial, Sheri Fink chronicles the agonies of survivors and the agonies of those whose loved ones didn't survive. By journalistic measures, Dr. Fink is scrupulous and exhaustive in providing evidence and speculation as to how and why some breathing and heartbeats were relinquished.
Her chronicle should have medical professionals and healthcare operators think more exactingly about how scarce resources might best be allocated in emergency situations. Her chronicle serves an extremely valid purpose -- should give life to difficult but necessary conversations, discussions, debates and sorting-outs.
This provocation is especially timely considering the "death panel" warnings prompted by the wider "publication" of the Patient Protection and Affordable Care Act.
While "death panel" talk rightly makes us uncomfortable, I wish several Memorial nurses and one physician in particular had been able to get their professional and personal lives back, unscathed. Too much to wish for, given what they had been through, especially given what amounted to vendettas of a few opportunistic politicians and a phalanx of opportunistic plaintiffs' lawyers.
The perspective of Thomas Keneally's novel nurse, Naomi Durance, stays with me and seems to me to be a wise adjudication as to whether we must wait for the body to "renounce further pain and suffering," or take a suffering-ending solution against a host of troubles:
"The thing is, they insist in certain cases that we maintain life whatever the pain - as if that isn't a sin, and that taking action [to provide an end] is."