She watches the steady stream of russet refuse flow from his nose through the nasogastric tube into a plastic bag at his bedside, a sewer pipe emitting a cesspool of refuse that his hoary 92-year-old bowels does not permit him to release. “They had to pull it out and start again last night,” he tells her. He looks straight ahead, remembering. “Awful.”
Canary-colored urine streams from a catheter in his bladder. Liquid nutriments run from another bag through a different tube into his veins to correct his dehydrated condition and electrolyte abnormalities. Her fingers touch the purple bruises where the lines sink into the top of his hands that link him to life. “They have a hard time finding a good vein,” he tells her and shrugs. “Whatdaya gonna do?”
She averts her eyes from the tubes and bags and looks through the large picture window of his hospital room. From his bed, he can see a vista of urban dwellings that stretch beyond the clumps of leafy treetops to a view of the seaport that widens from the harbor that give passage to the Cape Cod Islands. He watches the island ferryboats transport the hoard of summer tourists from the mainland to their destinations and relishes the view of the fishing vessels as they leave the port. She marvels at his ability to point out and distinguish the scallop or lobster boats from the trawlers, the difference between the clammers from the longliners and gil netters. “Lots of activity out there,” he comments. “If this weather lasts, they’ll go far out to sea for their catch. How much does a peck of clams sell for now?”
She smiles and remembers the smell of low tide that wafted from the ocean’s edge to cool the family and friends who gathered and broiled under the sun, eating their way through a Sunday afternoon in the backyard as he served them all in a white apron and chef hat. Pecks of fresh steamers and little neck clams, individually wrapped chunks of white fish, husks of sweet corn, Portuguese linguica, steamed hot dogs and red bliss potatoes out of a colossal pot that never seemed to reach the bottom found their way to the picnic tables that held pots of melted butter and empty dishes for the clam and paper spoils. No one ever left hungry. Anyone who sniffed the tantalizing aromas from the street and “stopped by to say hello” was welcome to dig into the abundant New England feast and drink in the salty scent of ocean where the feast originated. The banquet that he produced not only fed his voracious appetite for good chow: he drew deep pleasure from the joy of feeding others. His present fate now strikes her as cruel.
“About $25.00 a peck,” she tells him. He shakes his head. “Ya gotta be a millionaire to give a clam boil these days.”
His excrement continues to flow from his nose to its own sewage port. She remembers her astonished discovery at the profuse amount of human excrement the colon stores and emits when her mother emptied her bowels as frequently as a new born infant throughout the final week of her life. After ten years of advancing dementia due to a stroke that turned into Alzheimer’s Disease, Type 2 Diabetes, repeated hospitalizations for pneumonia and falls despite the safety of the new in-law apartment attached to her home and round the clock care, a visiting nurse indicted that it might be time to consider other options when her mother became barely responsive. “Let me call Palliative Care; she’s in a really dark place.” Her father attempted to digest the news. Although he had participated in the ongoing care of his wife, he could not believe that she would slide off the mountain before him. “She’s eight years younger than I am,” he wept. “How is this possible?”
He always chuckled that he had ‘robbed the cradle’ when he married her as a young 21-year-old bride. Four children were born; three survived. Late stage toxemia stole their first son and almost claimed her life as well. But she did recover, caring for her husband and their three children born soon thereafter, managing the household, joining school boards and church auxiliaries as her community service. Later, when more income was needed to pay for all the private school tuitions, she returned to work as an accountant, a field she loved and excelled in because of its precise and exact nature. Although she had no desire to lead, she became a loan accounts manager in her bank until progress merged smaller banks with larger corporate structures and longer travel distances. Still, she loved to ‘crunch those numbers’ and continued to travel long distances on a commuter van that the bank provided. Together, they cared for her widowed mother and unmarried sister.
When a second son died in his early twenties, they buried their broken hearts in the vaulted coffin and helped their son’s young widow to raise their granddaughter. His profound deafness decreased his chances at hearing beyond a one-on-one conversation. She accompanied him twice a week for five years throughout his training period as a permanent deacon, sitting in on the class lectures after a long day of work and returning home to type his notes so that he could study what he had missed in class lectures.
After a debilitating stroke affected her short-term memory, they found the humor within the dire. “What did she say?” he would ask her when he missed someone’s comment. “I don’t know, I can’t remember,” she would answer with a musical laugh that sounded like the sweet tinkling of sleigh bells. But illness staked its claim on her humor; she laughed less frequently and finally not at all. Her sentences became phrases; phrases became words; words turned into grunts and sighs. Medications and a restricted diet altered her taste; food no longer interested her. An icicle melting drip by drip from a snowy roof, she grew more diminished day by day. Still, the question posed by the Hospice nurse during a vitals home check still caught them off guard.
“Do you want to stop taking the medications that are keeping you alive and go into comfort measures only?”
The immediacy of her mother’s wordless nod prompted her to think that she didn’t understand the question. “Do you understand what that means?” she asked her mother. Again her mother had nodded, this time adding “Oh, thank God I don’t have to take all those pills anymore. They make me so cloudy.” That was that. Question asked and answered. No fanfare or trepidation, just a neat and tidy decision, so typical of her mother, as though she were putting the last finishing touches on a birthday package and giving it to some lucky recipient. Sign the paperwork and let’s get on with it. Clarity and appetite were last-hurrah gifts that returned for a few weeks until a sudden fall injured her spine and left her in excruciating pain.
Her mother’s last week of life taught her more than she cared to know about human excrement. Comfort measures included doses of pain-killing narcotics. The days of constipation were more painful than the injured spine relegating her mother to vomit refuse in a mouth basin while she sat on the toilet trying to push concrete through the colon. “Why don’t you just kill me?” her mother asked her in between heaves of black defecation. When laxatives forced what seemed like an endless evacuation of poop, she found herself cheering for diarrhea that relieved her mother’s discomfort while the colon emptied faster than the speed of sound. Once the volcanic eruption began, so did the frequent bed changes. Lifting her mother’s death weight to change the chucks became an added challenge on her own broken spine. Her physical pain grew as intense as the emotional throb of caring for her dying mother in her home while simultaneously caring for her old dad. Exhaustion crept in like fog during a bad weather front, not to mention the malodourous smell of shit.
The stink reeked from the in-law apartment, seeping into her house and remained for days. She used salt on her hands to wash the scent that crept into her skin as she changed chucks and hospital bedding. Eventually, the odious scent disappeared from her hands but not from her memory. After her mother died and her father’s prostate and bowel problems required diaper changes with hand cloth washes, she remembered to wear latex gloves. We really do return to our childhood, she thinks as she surveys her father’s tubing. Suddenly, life is all about bodily functions.
She knows that she should eat but watching his pipeline dials her appetite down. “I’m hungry,” he tells her. “How long has it been since I’ve eaten?” he inquires. “You declined food for four days at home because you were all backed up, remember?” she answers him. She can tell that he’s beginning to short circuit by how many times she needs to answer the same question as he keeps reviewing his event. “That’s why I called 911. You felt really sick and you weren’t eating.” He looks at her. “I thought I signed all that paperwork,” he tells her. His advanced directives included DNR paperwork; he had put them into place when he and his wife had assigned her as the executor of their will and appointed her as their health care proxy. “That paperwork means that we can’t revive you if you’re heart stops but that doesn’t mean that we should let you suffer while you’re still here,” she tells him. “There’s a difference.” He nods. He understands. He sways begin regret and gratitude. The question looms in the not far off distance.
“How long have I been in the hospital?” he continues, trying to measure his appetite against the duration of his illness. “You’ve been here for four days,” she tells him. “You haven’t eaten anything in eight days.” His eyebrows lift. “Long time,” he counters. “No wonder I’m hungry.” He pauses for a moment and asks, “I’ve had a lot of tests in the last few days. Has anyone said why can’t I move my bowels? Has my prostate cancer moved into my bowels?” She tells him that there could be a lot of reasons for his current back up but no one has given them an answer just yet. She doesn’t have the heart to tell him that she thinks that years of inactivity and his old age are huge contributing factors. “If you start to eat again before you’re colon is empty and you still can’t move your bowels, you’re just going to back up again and be in the same situation that you’re in now. One step at a time; we’ll figure this out.” He sighs and nods. “Are you still cleaning out the house?” he asks.
His 85-year old sister-in-law died several months earlier. Clinically depressed with a narcissistic nature, her inability to eat and persistent cough turned out to be congestive heart failure resulting in a two-week hospital stay in the Progressive Care Unit, where patients normally stay for only several days before they’re moved to a regular floor. The series of events that led to the two-week stay could be described as a norm for people who deny their mortality, refuse to face realities that have everything to do with them but in their minds, nothing to do with them and try to stave off the inevitable.
When the cardiologist suggested open heart surgery, her 85 year old aunt felt a surge of hope that she might live to be 105. Because the physician had privileges within this particular health system but was actually aligned with another, he recommended that the surgery take place where his own health system was aligned and a long distance away rather than the health system that she knew and was local to the patient and family. Mustering the hutzpah to face the dragon, she invited the cardiologist into the corridor outside the room and dared to question the acumen of his decision. “Do you really think that putting an 85 year old woman through this kind of surgery and then months of rehabilitation with a doubtful outcome is wise?” He looked at her with disdain. “This is fatal,” he sneered in a terse, laconic kind of way. She was dumbfounded at his insipid perspective. Is this guy for real? Was he honestly encouraging this sick old woman to undergo a surgery that she probably would not even survive? Was it a power issue? Maybe he just expects that his patients will never die, no matter how sick and frail they become, she thought. Talk about costly denial and then realizes that she’s been persuaded into the camp of natural outcomes with dignity verses alteration of human life. What about post-op outcomes, the possibility of infection, grueling physical therapy, not to mention where she would live upon release from skilled care? She was fairly certain that the cardiologist had no idea about his patient’s Hoarder Hell home; her aunt was as secretive as an animal in the African Bushveld. She wondered if the cardiologist really even cared about anything beyond the science of his patient’s personhood and knew that any further dialogue was pointless.
She invited a surgeon that she knew and respected and assigned to her aunt’s case into a frank conversation regarding the state of his patient’s mental health. She came clean about her aunt’s mental health, Hoarder Hell and the menagerie of potential disasters that would face her aunt if she decided to go through with the surgery. She beseeched him to persuade her aunt not to have surgery, to not to be afraid to ask the question. Everyone else seemed to be in denial; she needed an advocate on the side of common sense. He agreed; she took her first deep breath in very long time. He spoke candidly to his patient. “If you were my mother, I would tell you not to have this surgery,” and counseled her in that direction, kindly, sitting on her bed and holding her hand. Her aunt had sent him away with a polite “Thank you for your opinion” and called her back to her bedside. “I trust the cardiologist; he’s the one that I’ve seen since this problem started and he’s the one that has my best interests at heart. I just keep worrying where I’ll go if I can’t go back home after the surgery. It’s quite a mess in there,” she mused, casting a sidelong glance her way as the first-ever admittance that there might be a bit of problem in Hoarder Hell.
No one had been permitted into the first floor of the home for years, including her parents who owned the house and occupied two floors above Hoarder Hell. “You can’t even get into the house,” her parents told her before they moved into the safety zone of their new in-law apartment. “She has to push her way through a ten-inch crack between the door and the house to get in. We have no idea what’s in there; we just know that it’s a mess.” They accepted some of the responsibility for Hoarder Hell, caving under her aunt’s infamous tantrums and enabled her behavior until it was out of control. Even if her aunt did recover from surgery, social services would never let her return to those living conditions. She would die of an infection from filth and trash that filled the house. Moreover, services for the elderly would claim that the family was not providing good care and threaten to report them to the state. The family had learned that lesson from one her husband’s widowed aunts for whom they had cared for many years.
When her husband’s old auntie’s health became more than they could manage, her husband suggested that she move into a comfortable assisted living facility. His aunt refused. Despite their frequent visits when she needed food or rides to her appointments or someone to help clean the house, the aunt grew senile and began to wander from her apartment in a state of growing confusion, roaming the streets and becoming disoriented and confused. Neighbors reported his auntie’s wanderings to a local senior agency who called her husband. He hired a private nurse to stay with his aunt during the day; the aunt’s went to bed early and slept all night. During the day, the nurse took a nap when she thought her patient snoozed. Elder foolery taught her otherwise. Auntie escaped while the day nurse slept and continued her vagabonding until the police would find her and return her to the distraught caregiver. The local senior care services threatened to file a report against her and her husband for elder abuse. Completely worn out from his auntie’s demanding ways, her husband activated his legal guardianship, deemed his aunt incompetent to make her own decisions and admitted her into a nursing home facility. She had ranted and raged, wept and pleaded to come and live in their basement but finally acclimated to her new environment with the help of the facility’s competent staff. After several hospitalizations for elder issues, the auntie simply stopped eating. No one could induce her to even sip water. Her will to live ceased. She died about a month later of natural causes without anyone ever having to ask the question. Now they braced for another attack as another single aunt faced the firing squad.
“They just told me that now I have renal failure,” her aunt told her when she walked into the room. “What does that mean, exactly?” Had no one from the hospital staff explained the severity to her or had her aunt pretended to understand the severity of this new development? She decided to steer the ship straight into the harbor. “If you have heart surgery and survive it, your recovery will be very hard and include an extensive stay in a long-term care facility.” She did not add that Hoarder Hell would not pass health inspection for a post-operative patient. No one would approve sending her aunt back to four floors of the magpie mansion that included five generations of stuff that had never been cleaned out.
She forged on. “Even if you recover after a long haul, you’ll be on dialysis for the rest of your life.” A furrowed brow appeared between her aunt’s anxious eyes. “Dialysis….what is that?” she asked. Her aunt’s ignorance about the severity of her own condition caught her off guard. For years, her aunt had worked closely with health care providers in her job and volunteered for several hospital systems over the past fifty years. I guess we’re really never are too old to learn, she thought.
“Dialysis means that you’ll be hooked up to a machine to empty your kidneys because they no longer function on their own.”
White noise followed for what seemed an interminable amount of time. Her aunt broke the silence. “If I decide not to have the surgery, that means I’m going to die. Is that right?” A nod confirmed her aunt’s mounting and visible panic. “Well why can’t I die here? I like the people, it’s comfortable and everyone has been so wonderful. Why do I have to move? That means that I have to get used to another new place all over again? Oh my God…” Her vocal crescendo rose with each sentence. Rule adjustment served her as a lifelong cornerstone; she honestly believed that she was beyond most laws and regulations. Hell’s bells, she thought. Why should this day be different than any other?
“Well, this is hospital, where people come to get well. This is not a hotel. You’ve been here in a cardiac unit for two weeks when the usual stay is only several days. You’re holding up a bed because you can’t make up your mind about what to do on your own behalf.” Carpe diem, she thought. What better time to pose the question. “You have to make a decision. No one can make it for you. What do you want to do?”
Her aunt selected a nursing home facility that included Hospice Care and signed the hospital release forms within the next hour. Ten minutes later, a team of nurses arrived to pack the aunt up and load her onto a transport that would free them of their exasperating patient. Their expeditious confiscation stunned her aunt. “My God, I just signed the paperwork and they’re here throwing me out,” she declared. “Don’t I get a few more days to digest all this?” Aghast with a look that said, “How can anyone treat me this way?” she arrived at the nursing home in a state of such deep anxiety that she clung to a night nurse for most of his night shift, terrified of her impending fate. Renal failure caused her to break out into a histamine rash from the roots of her hair to her toes. She continued to cough up mucus and tried to push food down her throat that she immediately vomited in a swash bucket at her side. “I have to try,” she insisted. She declined all comfort medications because “I want to know what’s going on,” clinging to a minute to minute face off with death with her fist up and ready for a knock down draw to the end.
She watched the horror mount as this tiny pugilist fought against the inevitable. At the end of her life, her aunt was sleeping with the enemy of her own self-absorbed existence. “No one knows what this is like until you get here. I’m so afraid. I haven’t been perfect,” she said with terrified eyes that defined the underbelly of her entire psychotic existence. Several days later, she went down for the count, allowing comfort medication for the last 24 hours until she went into a coma and died in the presence of a caregiver.
After following her aunt’s instructions for her prearranged wake and burial (“I gave myself a really gorgeous funeral. Order the best food for lunch.”), she began the attack on Hoarder Hell and ended up with cellulites in her right leg from standing in filth and mountains of debris for hours at a time. Weeks turned into months. The episode catapulted her over the precipice of thirty-some-odd years as a care giver for a procession of aging relatives. Together with her husband, they had tended failing bodies and diminishing minds with the plethora of medical services that accompany the elderly, the sick and the dying. They attended to their spiritual and religious needs, moved them into care facilities, renovated their own home, altered their lives and their children’s lives to accommodate the needs and cares of a community of their elders who relied on them for everything. They cleaned out all the clutter from a plethora of their houses and bore the responsibility for the tangled web of business transactions and mounds of paperwork that surfaced even after dandelions grew on the graves of the dead.
A tick of bitterness sticks its nasty tentacles into her skin that kicks off a rolling river of emotions. For the first time in her life, she understands burn out. On some days, exhaustion morphs into depression; she feels as though she will die before her father. She wonders if Ponce de Leon ever imagined that a copious desire for a fountain of youth could cause such a tsunami of questionable ethical accountability and inevitable fallout of philosophical disparity within the practice of American health care. Moonstruck’s famous line “Because they fear death” becomes her favorite mantra and motto. “Thank you for answering my question,” Olympia Dukakis exclaims. Four months into the task of purging Hoarder Hell, she answers her father’s question about Hoarder Hell.
“Yes, I’m still cleaning. Unless I’m here visiting you, I’m cleaning out years of stuff in suffocating heat. The windows haven’t been opened in so long that they’re sealed shut. They’re no air so I have to wear a mask to breathe because the dust is really bad for my asthma.” He looks at her as though she has five heads.” She forges on. “Her attorney wants me to move the process along so he can sell the property and close her estate.” She wonders how he can be so obtuse; he enabled some of this havoc by not putting his foot down with his incorrigible sister-in-law. “She ruined our lives,” he admits. She wants to tell him that now he was ruining hers but kicking the horse while it’s down seems cruel. A nurse checks his vital signs. “I miss food,” he grins. He rubs his whiskers. “I should be careful how much I eat; I need to lose weight. Maybe I’ll drop a few pounds when this is over.” She laughs with the nurse. The battle of the bulge isn’t over until it’s over. “Dad, I think that you should just eat whatever you want and not worry about that anymore,” she laughs. “That sounds good to me!” cheers the nurse with a wink. The corners of his mouth twist into a small grin. Permission to cheat granted.
A hospitalist enters the room. He reviews test findings on his computer. “He’s quite debilitated and will require skilled care upon release,” the physician murmurs quietly to her. “Someone will be in to talk to you about choosing a facility.”
“What did he say? Can I eat soon? When can I go home?”
He relies on her to interpret everything that his profound deafness prohibits him from hearing. She tells him the truth: he will require an unanticipated detour upon release from the hospital. Her candor takes him off guard; he wants to return to the apartment that adjoins her home, where he helped to care for her mother through dementia, where she died 10 feet away from him in a hospital bed placed near the double bed that they shared for 60 years of marriage. He had so hoped to follow her soon thereafter. The card on his flowers that sat on the top of her casket read, “I’ll see you soon.” Four years later, he may have his chance to join her soon.
The physician now faces his patient. “Sir, now that your colon is empty, you can begin to eat food again. We’ll pull that line out and we’ll bring you a meal.” Her father’s toothless smile that beams across his face reminds her of the man in the moon when he understands that this nasal tube torture will soon end. “Great!” He chuckles with the delight of a young child who has just been told that he can have ice cream for dinner.
The physician pauses and weighs his words before he speaks his next words like a prophet heralding the end of an era. He sits directly in front of her father. “None of the tests indicate a specific medical issue that’s causing your bowel obstruction. Perhaps the condition is caused by others – declining heart function, perhaps prostate cancer, advanced years --- it’s difficult to say at this point. The main thing is that we want to keep you comfortable so this will not happen again when you begin to eat food. We will try a new bowel protocol to keep everything moving along.” The physician looks satisfied. He has covered all his bases.
She looks directly into her father’s face and speaks slowly. “Do you understand what the doctor is saying?” she asks him. He nods but she can tell from his absent look that he will ask her to interpret what he has just pretended to hear in his profound deafness. He can only focus on his taste for real food and the promised meal that will arrive very soon. She knows that he does not comprehend the physician’s words.
She mentally checks off the growing list of his illnesses. Bowel failure. Kidney failure. Advancing prostate cancer. Congestive heart failure. An aneurism behind the left temple. Although he has three different hearing aide devices, he must read lips to hear anything out of his partial good ear. She suspects that the big dark brown warts on his forehead that remind her of broiled skin on a plump rotisserie chicken will soon rear its ugly head and turn into squamous cell carcinoma. His wife and two sons have died and his youngest son lives on the other side of the country. ”Vous serez le porte à ma vieillesse,” he used to tell her as a child. She wonders how he knew that she would be the only one available to serve in the capacity of the doorway to his old age. Now they stand together in front of two portals; he will elect to walk through one of them. The elephant has officially entered the room.
She waits for the physician to pose the question that evinces on a marquis in bold block letters behind her eyelids. Her father’s choice of doors will decide his fate; who will ask what only he can determine? The question percolates inside her mouth. She wonders at her own motives. Is the question a ruse to jump-start his spiral downhill? Will he choose to be a turtle or a hare to the end of the finish line? She shakes off the guilt; the question is ethical and humane. Does she want the physician to ask the question to get her off the hook and ease her conscience, like a get-out-of-jail-free card? The elephant in the room swings its trunk like a pendulum while she waits for the physician to ask the question.
It comes as no surprise to her that the question never emerges from the doctor’s lips. She’s weary from venturing where many physicians do not seem willing to fly. She knows that she must chart the course yet again.
“Dad, you’re too sick to go home. You need to go to a nursing facility for rehabilitation. We’ll have to wait and see how you do little by little. Your body seems to be shutting down.” She pauses as he processes the information and then dives into the deep end of the pool. “Do you want to go off of your medications and go into comfort measures, the way Mom did?”
The question detonates like a silent explosive in the middle of the room.
The physician appears flustered. Her curve ball knocks him off base and she knows immediately that she stands on the opposite side of the physician’s invisible fence. Science and ethics in conflict create problems for patients and their families. The thought charges through her head like a horse galloping through a copse of trees. She almost expects someone from offstage to call out “Lights! Curtain!” to close this scene of the play that the actors script as the drama continues to unfold.
The question causes her father’s expression to turn from the fear of what lies beyond the portal of one door to resignation of what lies beyond the other. She waits. The elephant’s trunk stops its pendulum sway as she waits for his reply.
“I’ll stay on my medications,” he answers.
She places her hand on his shoulder to brace herself for the road that he chooses for both them both.
***
Dignity of Moral Conscience
"Deep within their consciences men and women discover a law which they have not laid upon themselves and which they must obey."
"Conscience is the most secret core and the sanctuary of the human person. There they are alone with God whose voice echoes in their depths."
"By conscience, in a wonderful way, that law is made known which is fulfilled int he love of God and of one's neighbor."
"Through loyalty to conscience, Christians are joined to others in the search for truth and for the right solution to so many moral problems which arise both in the life of individuals and from social relationships."
"The more a conscience prevails, the more do persons and groups trun aside from blind choice and endeavor to conform to the objective stadards of moral conduct."
from Church in the Modern World ((Gaudium et Spes), #16
Denise Morency Gannon