Graceful Exit

Letting Head and Heart Guide You Through the Hardest Decisions

Translated from Latin, deus ex machina means “a god from a machine.” In ancient Greek and Roman plays, the phrase referred to a crane that held the image of a god above the stage, a power introduced to suddenly solve a problem the play’s characters had been struggling with. In today’s world, the godlike machines sit in hospitals. Instead of cranes, they are catheters, respirators, and any assortment of tubes necessary to support life. The problem they solve is not whether boy meets girl but whether someone lives or dies. And the story concerns the precious life of a loved one.

Making the decision to remove a loved one from life support is never easy. Many factors come into play, including age, number of medical conditions, and how much intervention is too much given the prognosis. Of equal importance is the patient’s personal story—a desire to live to see a grandchild born or until a loved one can fly home. This story goes hand-in-hand with the patient’s wishes—those expressed legally through advance directives, as well as those discussed casually with friends and family. Religious and spiritual beliefs may dominate among these factors. But in my experience, the power of a family’s instinct often overrules everything.

A Family’s Strongest Instinct

I recently cared for an elderly gentleman after he had endured a massive stroke. He was in the ICU, intubated for weeks and weeks. Despite all the antibiotics we pumped into him, his infectious complications grew. There was no solution. We could keep him alive perhaps a few weeks longer, but that was the best we’d be able to do.

As a physician, it is difficult to approach the family of such a patient. As terrifying as the tubes and wires and machines needed to keep the lungs billowing, the heart beating, and the body nourished are, quite often a family’s strongest instinct is to keep their loved one alive for as long as possible, by any means possible, including by depending on the godlike hospital equipment for far too long. Yet as a physician, this I know: every day that a patient like this lingers increases the potential for suffering that comes from a worsening condition and from the medical interventions designed to keep him alive and breathing.

A well-informed patient or family is key to turning what can be the most contentious part of all life-and-death decisions into a sound resolution based on love, respect, and understanding. In the best of circumstances, your loved one’s medical team will deliver this information to you with compassion. But you might feel overwhelmed and lost in a sea of data, beliefs, emotion, and advice—or struggle to get the information you need. In this chapter, I show you a way to get what you need in order to merge instinct with rationality when under pressure to make what is, without a doubt, one of the hardest decisions you will ever have to face.

All of us must exit this earth. In the case of end-of-life support, we have some degree of control about when, where, and how. If we subscribe to the idea that a graceful exit is in everyone’s best interest (which, by now, I hope you do), our goal is to make our decision feeling grace and peace in our hearts. And so here is where science meets spirituality: a great deal of grace and peace can come from knowing and interpreting the scientific data, all while considering your loved one’s values and personal story.

When making end-of-life decisions, family members must momentarily set instinct aside, at least long enough to weigh all these factors and discuss them with family and anyone else involved. When family members don’t agree on a plan—which happens a lot, especially in the early hours at the hospital—even the most obvious action becomes a source of contention. So it’s helpful to have some guidelines you can follow.

The plan I’m offering you here is a balanced approach between the two current trends in medical practice: one is full of overpromises resulting in overtreatment; and at the opposite extreme is a pragmatic view based entirely on quality of life and usefulness—if the person is no longer useful, dispose of him. A doctor may take one or the other approach or something in between. He or she will communicate these thoughts through words, actions, and body language. You, as an involved family member, will pick up on what the doctor believes. But regardless of what the doctor’s fundamental beliefs are about life and death, we can start to reach a balance between these two competing ideas and come to our own conclusions. We can start by looking closely at the medical facts.

When the Best Medicine Hurts

Like everything we perceive as “good,” advances in medical care can be a double-edged sword. As clinicians, we can keep patients alive long enough to give their bodies a chance to recover, so they can sustain themselves. But when recovery does not happen, or when the patient suffers from multiple life-threatening conditions, these advances in care cross a line. They can move from being a blessing to a curse. The patient doesn’t get better but either drifts along or gets worse. Usually, these patients get caught in a treatment cascade, where the fix for one problem creates another problem so that discomfort and suffering escalate, often in the form of bedsores, broken ribs, and infection.

Using CPR to resuscitate a patient who has stopped breathing and has no pulse can result in broken ribs (an acceptable risk when a person has a chance at recovering), which causes pain every time the patient breathes, coughs, or otherwise moves. Patients who are connected to breathing and dialysis machines frequently suffer through the infectious process, which involves pneumonia, skin infections, and ulcers. All of this is complicated by low blood pressure, so we must use potent medications called vasopressors to increase blood pressure. They work by squeezing the blood vessels in the legs and arms. In many instances, the blood supply permanently ceases to reach the fingers and toes, resulting in dead tissue (an initially painful condition we call “dry gangrene,” in which the skin blisters and turns black and blue). Once the muscles begin to deteriorate, most organs will shut down. The smell of dead tissue starts to colonize the patient’s room. When we reach this point, the battle is lost no matter what we do.

Most ICU clinicians intuitively know when ending life support becomes the better option. They see the same scenarios almost every day. Families, however, only see another day spent with Mom or Dad. This is understandable and reasonable but only to a point. Relying on life support when efforts to save a dying patient only produce more pain prolongs the inevitable—sometimes for a day a week or a month, and sometimes for a year. And it hurts the patient.

Many families choose hospice or palliative care toward the end of life. Still, it is not uncommon to see dying patients linger in a hospital, hooked up to machines and surrounded by strangers in a sterile environment. In some cases, the family members who chose to keep their loved one on support show up less and less often to visit. On paper, it sounds cold and cruel, yet it all boils down to perspective. Loved ones believe they are doing the right thing by keeping Mom or Dad (husband, wife, son, daughter) alive. They are acting on a primal instinct: survival is good. In this day and age when medicine is the deus ex machina, they have no context for believing otherwise.

For perspective, I’m going to share some true stories with you. The names and some of the details have been changed to protect the patients, but these are stories of real people I cared for in the ICU.

Mr. Nathaniel Abrams’s Case

The Abrams family had been well known to the hospital staff over the course of a year because of the attentive and involved care they provided for their father, Nathaniel. When Nate first came to our hospital, he was eighty-nine years old with multiple medical problems, including diabetes, hypertension, and kidney failure. He had also suffered a massive stroke that caused severe, permanent brain damage. As a result of having spent months in bed, he had developed multiple decubitus ulcers, commonly known as bedsores, in various stages from blisters to wounds in the back that penetrated all the way to the bones. He also suffered from a lower left leg fracture, leaving him with one leg four inches shorter than the other.

I remember seeing his family (prior to our team being consulted for a second opinion), his two sons and his daughter, always by his side, day and night. I am almost always uplifted when I see family members tend to a loved one in the hospital, but I felt a different sensation with the Abrams family. To me, they seemed driven more by a false sense of optimism than by the reality of what was happening to their father’s health.

They were often in the hospital hallways, pacing in and out of his room from early morning and until late at night as if they were sentries looking out for their father on the “battlefield.” They were there to be their father’s advocate, constantly requesting assistance from nursing or the nurse assistant to ensure he was turned frequently due to his pressure sores and that he was cleaned as needed. The siblings would sleep overnight at the hospital, each of them taking turns lying next to him, making sure everything was all right. The daughter kept a very detailed log of everything that went on during the months Nate was hospitalized. She recorded urinary output, medications administered, vital signs, new wounds that popped up, and ventilator settings. But I’m not sure how they evaluated the information they collected. The Abrams children had an immense, unfathomable amount of love, in an almost zealous sense, for their father. And I believe it was this devotion to him that prevented them from taking a step back to see the bigger picture: their father’s health was only declining, albeit gradually.

Before coming to see us, Nate had been discharged from an LTAC hospital. He was initially discharged with the plan of entering hospice care. His family, however, rescinded this plan. Nate again went into another cycle of acute-care hospitalization and was then transferred to the LTAC facility in hope of recovery. During this second admission, however, he continued to deteriorate and went into total muscle fatigue, a condition in which the lungs are incapable of breathing out carbon dioxide. He was in respiratory failure. He was sent to the hospital, where a major decision had to be made: to intubate or not to intubate.

From Tracheal Intubation to Tracheostomy

The main purpose of intubation is to maintain an open airway and facilitate ventilation. Ensuring that an unconscious or traumatized patient has an open airway is a doctor’s number one priority. If the airway is blocked, the patient can’t breathe. Intubation can be temporary: A plastic tube is inserted through the nasal passage or mouth and into the trachea (windpipe). The tube is then hooked up to a ventilator, or breathing machine. Temporary intubation is appropriate for about one week. If the patient cannot breathe on his or her own after that, a surgical procedure called a tracheostomy is the next step. “Traching” a patient requires surgically opening the trachea through the neck to insert a more permanent tube. Risk factors include the following:

• Inability to be weaned off the ventilator

• Obstruction of the oronasal passages (in the case of burns, facial fractures, infection, laryngeal cancer)

• Inability to protect respiratory function (in the case of a massive stroke, head trauma leading to unconsciousness, or chronic debilitating neuromuscular diseases)

“Do Not Intubate” (DNI) orders overrule this step, precluding oronasal intubation and tracheostomy. A DNI order can be discontinued by the patient or proxy at any time in the treatment process.

DNR, DNI, and AND Orders

Medical acronyms can be confusing. The following is a quick guide to some critical ones.

DNR: Do Not Resuscitate. When a patient stops breathing or the heart stops beating, a DNR order dictates that clinicians are not to perform CPR—no chest compressions, cardiac drugs, or breathing tube.

DNI: Do Not Intubate. CPR and cardiac drugs are allowed, but a breathing tube is not allowed.

AND: Allow Natural Death. An AND order ensures that the only medical measures allowed are to make the patient as comfortable as possible (pain medication, for instance). Fluids, feeding tubes, and other artificial means of support are not allowed. AND is akin to hospice and palliative care.

Tracheostomy is a major medical decision when a patient is unconscious with multiple debilitating and nonreversible medical problems, such as a severe stroke, kidney failure, heart failure, chronic bronchitis, or chronic circulatory problems responsible for multiple hospitalizations. As time passes, infections, nutritional deficiencies, and muscle weakness can create a downward spiral, and weaning off the breathing machine becomes more and more difficult. The chances that Nate would successfully come off the breathing machine were close to zero, given the extent of his brain damage plus all of his other preexisting medical conditions.

We tried our best to educate the family about what would be involved in extubating and weaning off the ventilator for a man in Nate’s condition. It’s a delicate procedure that can damage the vocal cords, teeth, and lips. It can also perforate the back of the throat, breaking the trachea (windpipe) or ending up in the esophagus (food pipe), an event that drastically lowers oxygen levels, resulting in further brain damage. The chances of complications from intubation are far lower with an elective surgical procedure or in young people. Their mouths can be opened with minimal limitations. Older adults and patients with chronic debilitating diseases are a different story. Arthritis and muscle rigidity are among the most common limitations for mouth opening. Even with this information, the family decided to go forward with intubation, still with an unrelenting optimism.

We performed the tracheal intubation. Eventually, Nate reached the point where the plastic breathing tube in his mouth needed to be made more permanent. This tube can be used for a limited number of days before it induces mechanical complications such as burning of the tongue and vocal cords. The tube is held by tape or adhesive plastic and can easily dislodge and come out—a relatively common complication in ICUs. To avoid this complication, we tend to keep patients sedated, which in turn contributes to the prolonged intubation. After a week of being connected to the breathing machine via the plastic tube, the patient must undergo the procedure again, this time with the more permanent version.

Nate required placement of a tracheostomy, a surgical procedure performed under general anesthesia in the operating room. In this procedure, the surgeon cuts the skin right below the Adam’s apple to reach the windpipe and then passes a rigid plastic tracheostomy tube into the windpipe. A tracheostomy is not a complicated procedure for a generally healthy person, but this wasn’t the case for Nate. His neck was short and wrought with severe arthritis, which limited the extension. He was also on blood thinners, which makes bleeding highly probable. We can easily put pressure and stop the bleeding on our skin but not on a windpipe.

Multiple attempts were made to wean Nate off the ventilator after he received his tracheostomy; however, due to his profound muscle weakness and multiple medical conditions, he consistently failed those attempts. The longer on mechanical ventilation, the more likely the patient will contract an acute infection, and this was inevitable for Nate. His body was simply not strong enough to fight an infection.

During the last few months of his hospitalization, Nate was in and out of the ICU battling ventilator-associated pneumonia, sepsis, and acute kidney failure. Despite Nate’s declining condition, his family still wanted everything to be done. They became desperate and unreasonable in the sense that they did not take no for an answer. The family began blaming everyone for their father’s overall deterioration and allowed paranoia to take control, even to the point of being aggressive toward hospital staff. They were desperate to the point that they were willing to transfer him to an acute-care facility and initiate an organ transplant to save their father’s failing kidneys.

The nursing staff and physicians repeatedly approached Nate’s family in regard to the sensitive subject of end of life. Our team spent hours educating his family about his condition and prognosis, attempting to get them to see the reality of their father’s situation: He was suffering from multiple ailments and confined to a hospital bed without any quality of life. Each day, he became more bloated and developed additional skin ulcers. Despite having had endured some of the most advanced medical treatments available, Nate did not have any chance of recovering. His body was beyond repair.

Nate’s last days were back in the ICU, where he stayed until his passing: in multi-organ failure, with severe septic shock, on life support, and with the maximum concentration of medications that supported his blood pressure. He was bleeding from the catheter placed in his urethra and from his abdominal feeding tube (PEG), mouth, and every orifice. His heart eventually gave way and stopped. After multiple rounds of CPR for over sixty minutes, the medical staff could not bring him back.

Nate had never made his wishes clear to his children, who in turn could not understand the limitations of medical treatment. I will never know the whole story behind their story, the reasons for their decisions. I’ll never know, and who am I to judge? What I can do is teach patients and families about the limitations inherent in end-of-life care. I can also bring attention to the consequences of overpromising, perhaps one of the most common reason for the lack of trust in physicians.

Ms. Elaine Torres’s Case

Elaine Torres, a sixty-eight-year-old woman, suffered a sudden-onset seizure episode and subsequent fall causing a massive brain bleed (subdural hematoma) that left her unconscious and with brain damage. Elaine underwent two emergency brain surgeries, including a frontal lobectomy, or removal of the brain’s frontal lobe. Although a fairly common procedure for epilepsy patients who need surgery, the surgery, as you can imagine, doesn’t come without risks or disappointment. Postsurgery, a CT scan of the brain showed she had already suffered from multiple strokes. The procedure showed no worthwhile improvement. Elaine remained permanently brain damaged, totally unresponsive (encephalopathic), and unconscious.

Given her history, chances of neurological recovery were slim; however, in the beginning of her admission to the LTAC facility, her family was optimistic. They took every little improvement in her mental status as progress and seemed very involved with her care. They visited her almost every day, more frequently in the beginning but less as time went on. They placed a stereo at Elaine’s bedside, tuning in to her favorite radio stations for her to enjoy, and most memorably, they attached posters along the room walls, detailing her life and background, encouraging all hospital staff to treat her as they would their own family. This display was quite touching to all the staff. It elevated the sense of respect everyone had for Elaine and her family.

Throughout Elaine’s stay at the hospital, the family maintained good rapport with the nursing and medical staff. We constantly kept in good communication with the family, updating them on any status changes of their beloved mother.

There were moments during our team’s encounter where we felt as if Elaine were “waking up,” brief moments where she would appear to mouth words or respond to her name being called. Those moments were short lived, as the next day, she would revert back to staring blankly at the ceiling with random, nonspecific head movements. She stayed like that throughout her hospitalization, with some good and some bad days, battling infection and recurrent seizures, transferring in and out of the ICU.

Over the course of more than eight months in an LTAC facility, the family came to terms with the fact that Elaine was not going to fully recover. Hospice and palliative care options were explored; however, her family was not ready to make that decision. Elaine was therefore transferred to a skilled nursing facility, where she lives as of this writing—occasionally visited by friends and family. She remains bedbound and in a vegetative state.

Hospice and Palliative Care

Hospice is a means for providing comfort and compassionate care rather than treatment or cure to terminally ill patients who are expected to die within six months. By entering hospice, patients or their proxies have chosen to turn down further treatment to sustain life artificially. A team of health-care staff and social workers, as well as clergy, ensures the patient and family have the necessary supports, including pain medication and a hospital bed (if at home), as well as spiritual and moral support. Hospice can take place at home or in an institution such as a hospice center or nursing home. With at-home hospice, the family must provide a full-time caregiver. The number of people choosing hospice care has grown in recent years, in part because the programs have expanded the types of diseases that can be addressed, including dementia and diabetes. Medicare, Medicaid, and most private-pay insurances cover hospice. In 2015, according to the National Hospice and Palliative Care Organization, a growing number—almost 45 percent—of deaths in the United States happened in at-home hospice.1

Palliative care is similar to hospice except it can begin at diagnosis and include treatment with the intention to cure. These programs are designed to help people with a serious illness maintain a better quality of life while they are undergoing treatment. Treatment takes place at home or through outpatient visits to the hospital, and a team of people visit patients at home regularly. Medicare, Medicaid, and other insurance providers cover all or part of the cost.

Analyzing the Data

No legitimate doctor wants to end a life prematurely or cause undue pain and suffering. In most cases, the information a doctor is giving you is in your loved one’s best interest. The prognosis is not pulled out of thin air but based on experience and knowledge, with a dose of gut instinct. At the end of the day, however, doctors are scientists, and we turn to the available data to help us make life-and-death decisions.

To create a solid indication of your loved one’s chances for survival and recovery, doctors use what’s called an APACHE score. You may never hear the term when talking to your loved one’s doctor, but you can be sure she’s using it if the patient is in the ICU. If you’re not sure, ask her to calculate it for you and to spell it out. Data may not seem to have a place in matters of the heart, yet the knowledge it relays can set your mind at ease, even more so when you are emotionally drained. Doctors find it useful to drive home the information to family members. It helps family understand the fine line between using technology to help or hurt. In my experience, family Leaders find this information extremely useful.

APACHE stands for Acute Physiology and Chronic Health Evaluation. Its use is standard in the ICU, where, within twenty-four hours of admission, your loved one’s doctor should have the data in hand, ready to discuss it with you at the meeting you request. The system uses points to measure key physiologies to get a sense of how severe the patient’s condition is. It looks at levels of sodium and potassium, white blood cell count, body temperature, responsiveness, and more. It takes into account organ function and whether the immune system has been compromised. Scores range from 0 to 71. The higher the score, the lower the chance for survival. The score is placed in one of three levels. Here’s a simplified version of the APACHE score in three levels and what each indicates:

Level I	< 20 points = 80%–90% chance of survival
Level II	20–35 points = 50% chance of survival; very critical condition
Level III	> 35 points = 80% chance of death

The APACHE score is not perfect. The data indicate chances for survival, but as you can see, there’s room for interpretation. At level III, the patient still has a 20 percent chance of surviving. Here’s where the art comes in. Your doctor’s expertise, the patients he’s witnessed in his career, his observations, his estimate of quality of life, and his understanding of the patient’s wishes all come into play when he comes up with a prognosis. Your level of trust in the prognosis is directly related to your level of trust in the medical team. Hard facts are just that—hard facts. But when you know the team has your loved one’s best interest in mind, you’ll feel that the information you’re getting is worth listening to. I can’t emphasize enough how important this trust is to your well-being.

The Power of Faith

I believe in miracles, and I’ve seen my share in the ICU. So I never underestimate the power of faith to heal. People of faith believe in what they cannot see; they place their confidence in the hope that God can and will unleash His power to heal illnesses or families. They put their trust in God before doctors, and I am not about to argue with that. After all, I’ve seen it happen—patients who’ve recovered miraculously from massive strokes, multi-organ failure, tumors, and the infectious process, for instance, despite the data pointing toward imminent death. Most ICU health-care professionals carry in their memory bank at least one recovery that can only be explained as a miracle. My own daughter, Lauren, is my constant reminder that faith has the power to heal. Her birth turned me from an atheist into a believer.

Lauren’s Story

I remember vividly the day my wife, Nikki, told me she was pregnant. What wonderful joy I felt! But my joy lasted only twelve weeks, at which point an ultrasound revealed the presence of a placental tumor. At that moment, a deep pain conquered my heart, stopping it for what felt like several seconds. It was fear, of course; fear for my wife and for that little life inside of her that I began to love from the day I learned she would one day be part of our family. I spent hours and days researching all possibilities, which only seemed to add to my stress. Meanwhile, my beloved wife anchored her life in her faith. She was surrounded by a group of wonderful women from her church, who prayed for her regularly and visited once a week to pray directly over her and the baby.

Nikki was referred to the top perinatologist in Miami. We saw him every two weeks, and he patiently answered my hundreds of questions. At week 26, he found that the mass was compressing the umbilical cord, risking the baby’s life. He sent the 3D pictures of the mass to many experts around the world asking for advice. Basically, there were two camps: some experts advised an early delivery, while others promoted a “watch and wait” approach. We all sided with the latter, with weekly follow-ups to check the mass and general well-being. At week 27, the ultrasound revealed that the baby had stopped growing. I could not sleep for a week. My wife, however, carried an incredible peace. We celebrated a few ounces of growth on week 28, but by week 29 the mass was as big as the baby.

The worry shifted to cesarean or natural birth, and with the help and guidance of a wonderful gynecologist and perinatologist from the Baptist Hospital of Miami, we decided on natural birth. On that day in June, after eight hours of labor, my wife anxiously anticipated meeting our daughter. I was expecting my daughter with much excitement and anticipation, but I couldn’t separate the doctor from the father. I was also ready to meet “Mr. Mass,” the one who had robbed me of my joy for months.

I was holding my breath. The baby came out first, and she cried, which gave me permission to breathe, laugh, and cry—what a confusing moment! Then I heard a distant voice, as if someone were speaking through a muffler, “Gus, Gus, cut the cord.”

“Oh yes, yes of course.”

Half of my brain was looking for the placental mass, anticipating problems and follow-ups. All of a sudden, I heard the doctor say, “Here is the placenta. Let’s review this.” I jumped and joined the review. Where is the mass? We moved the placenta around in search of the mass, but there was no mass to be found. I asked him to check again and again. Nothing was found. Nothing!

Some people may say it was false imaging, but the mass was present in all ultrasounds. Others may say it was a fluid cyst that erupted, but it appeared as a solid mass in the ultrasounds. To my wife, to me, and to our church family, it was a miracle. Lauren has been a healthy bundle of joy, a brilliant young lady who wrote her first fiction book at the age of thirteen. She is truly a gift from God—our little miracle who walks, talks, and loves.

I cannot even pretend to compete with God, nor would I want to. The best-case scenario is that God is working through me and every other clinician who must deliver a difficult prognosis. And so whether you place your trust in God or the doctor or both, my hope is that you can do so fully and then consider and honor to the best of your ability your loved one’s wishes and values concerning death and dying before deciding whether to end or sustain life support. In the hospital setting, our job is to honor those wishes. Sometimes, however, doctors openly disregard a living will that crosses into a gray area.

Living Wills and Gray Areas

The living will is not a binding document and very likely will never be because it reflects an ongoing process. Although there have been reports of doctors disregarding a living will for financial gain, this is not a common practice. Doctors sometimes refuse to comply with the wishes reflected in the will based on objections of conscience or because they consider the wishes medically inappropriate. In these cases, the care should be transferred to another health-care provider, and the ethics committee should become involved.

It is important to review living wills yearly or at least when health status changes. Consider Mr. Aaron Johnson’s story.

Mr. Aaron Johnson’s Case

Aaron Johnson was a healthy seventy-five-year-old man with no significant chronic medical problems. After the death of his wife, he lived alone in the apartment he’d shared with her for nearly twenty years. I met him in the ICU with a severe urinary tract infection caused by the bacteria E. coli. Within hours of entering his body, the bacteria disseminated into his bloodstream, releasing toxins that caused a massive vasodilation with profound hypotension, a phenomenon called septic shock. He required a substantial amount of fluids and vasopressors (blood vessel squeezers) to keep his blood pressure within normal range. He became unconscious and could not keep his airway open on his own. His son, Eric, was by his bedside and showed me his father’s living will. This simple document stated that Aaron was DNR/DNI. It listed no specifics, leaving no room for interpretation. I was not comfortable with this living will. Most living wills are not this cut-and-dried, black-or-white. Most are conditional.

I knew that Aaron had a great chance of survival if treated appropriately, which meant he needed to be intubated. Before offering my opinion, I decided to talk to Eric about his father. I needed to know more about Aaron. Why would he create such a vague document when it concerned life and death? I was searching for the story behind the story.

“What prompted your Dad to get this living will with no room for reasoning? You know, Eric, life is not black and white. Your Dad is healthy and has a great chance of survival. What was this past week like for him? Can you take me through it?”

“He is very active, involved in multiple volunteer activities. His life is full.”

“Was he depressed?”

“No, no way. He fights against that. He is full of life.”

After half an hour of exploring Aaron’s life, I told Eric that I disagreed with the DNI. I was convinced that he had a great probability of surviving this event. The bacteria were sensitive to all antibiotics, the kidneys were slightly abnormal as a result of the low blood pressure, but the kidney function was gradually getting better.

“Eric, this is an area where medicine has improved tremendously. Most people in his situation survive, even when they have chronic debilitating diseases such as chronic obstructive pulmonary disease (COPD) or diabetes.”

Eric and I were at the bedside, and we waited until Aaron was fully awake to talk. I described the ordeal and confusion. He was glad we did it. He told me, “Doc, I don’t want chest compressions, but a chance of survival . . . absolutely. I still have things to do on this side of the world.”

The Human Element

You’ve got the data. You may have said your prayers. Now you need to look into your loved one’s heart. Knowing what your loved one wants or doesn’t want in his or her final days isn’t always crystal clear. If advance directives exist, we owe it to our loved ones to abide by their wishes when it makes sense. When advance directives don’t exist—or are grossly outdated—we need to draw from what we know about our loved one:

• Is he religious?

• What would his faith tell him to do?

• Does he value independence above all else?

• Would he be happy being alive but not “living”?

Sometimes, when family members gather at the hospital and begin to talk about it openly, they remember a comment here or a comment there that the patient made regarding how she wanted to be treated during the final days. These clues, small as they may be, help families form decisions.

The temptation to draw from our own beliefs and values is powerful. A daughter who believes in doing everything possible for as long as possible might face opposition from her father, who has seen his wife suffer far too long. When the natural instinct is to keep someone alive no matter what, I find that it’s sometimes important to give family members permission to let go. I tell families they don’t have to decide today, and then I prepare them for the flood of emotions. I spell it out. I let them know that guilt, anger, fear, confusion, and blame are normal human responses to loss. These intense emotions can blind us, and the simple act of carefully bringing them into the conversation is all a family needs to open the eyes of their hearts.

There’s a time when you have a responsibility to keep fighting for your loved one and a time when it’s best to let go. Crossing that line is not easy. No one can make the decision itself—what seems like a decision to play God—easier for you, but your medical team can help guide you to a place where you and your family are at peace with the decision you do make.

I have learned that people understand pain and suffering very well. When families grasp that, and understand that everything possible has been done, the decision usually just happens. People get a sense of relief when they make these kinds of decisions. It’s beautiful and peaceful to see families reach this conclusion, where guilt is discarded and frustration is out of the picture and people just get down to the very essence of being a human and connecting with their loved ones.

The Decision to Begin Life Support

Many factors affect the decision to begin life support with a breathing machine. Mechanical ventilation is indicated when the patient’s spontaneous breathing (ventilation) is inadequate to sustain life. The medical indications for life support should not be interpreted in isolation but in the context of each patient. Age, presence of multiple medical problems, and physical fitness will impact the recovery and prognosis of each patient. The following are reasons to begin life support:

• Persistent decrease in breathing rate (bradypnea [< 8 breaths per minute]) or total cessation of respiration (apnea) associated with respiratory arrest

• Acute lung injury (inflammation) due to infections, response to surgery, or complications of it

• Persistent fast breathing rate (tachypnea [>30 breaths per minute])

• Persistent low oxygen levels (<85 percent) associated with bradypnea or tachypnea

• Respiratory arrest after massive strokes, accidents, drug reactions, toxic exposure, or massive allergic reaction

• Gradual deterioration of breathing mechanics (tachypnea or bradypnea) after loss of consciousness from strokes, accidents, drug toxicity, etc.

• Respiratory muscle (diaphragm and chest wall muscle) fatigue

• Obtundation (a dulling or slowing of mental alertness that can evolve to coma if untreated) or coma

• Persistent low blood pressure (hypotension) with abnormal breathing mechanics (tachypnea or bradypnea)

• Acute or chronic nerve muscle diseases (neuromuscular disease) resulting in severe muscle weakness

• Heart failure with massive fluid in the lungs (pulmonary edema), which occurs when the heart is not capable of pumping the demands for blood supply, resulting in fluid accumulating in the lungs

ACTION Connect with Your Loved One

Overwhelming thoughts and feelings have a way of sorting themselves out on paper. Take some time to answer the following questions about your loved one’s health and values:

• What are the medical facts concerning your loved one’s medical condition?

• What are his or her religious or spiritual beliefs about death and dying? If you’ve never discussed this, write down what you think they might be.

• What do you think the patient would do if he or she were able to decide?

• What would you want or expect your loved ones to do if you were in a similar situation?

Caring for You

Find a good listener, whether a nurse, care coordinator, friend, hospital social worker, or clergyperson. Look for someone who will hear out your side of the story without judgment and give you an outside perspective. Once you find such a person, try to articulate not only the situation but how you feel about it as well. I always ask patients who seek my counsel if they want my advice or if they prefer I just listen without comment.

Main Chapter Takeaways

• Making the decision to remove a loved one from life support is never easy.

• Age, number of medical conditions, as well as the patient’s personal story and values must be considered.

• The natural instinct is to keep the patient alive, no matter what.

• Having the medical facts can help us override instinct when aggressive medical interventions would do more harm than good.

• You have the right to be treated with compassion by hospital staff and clinicians.