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Life and Death Decisions—Between a Rock and a Hard Place
All the passages below are taken from the book “The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life” By: MD, Ira Byock. It was published in 2012.
I listened carefully as Mrs. Maxwell’s family described their beloved mother, aunt, and grandmother.
We sat in a crowded conference room in the intensive care unit or ICU. Six members of Janice Maxwell’s family were present— her daughter, Evie, and her husband, Frank; her son, Ellis, and his wife and their son, Ellis Jr.; and Cici, a niece who lived next door to Mrs. Maxwell. In addition to myself, there was Dr. Carrick Utley, an oncology fellow rotating through our service, Dr. Christine Geffen, Mrs. Maxwell’s current attending critical care physician, a consulting neurologist, a nurse practitioner from the cardiology team, the primary nurse taking care of Mrs. Maxwell today, as well as one of the ICU social workers and a chaplain.
Members of two additional specialty teams (infectious disease and cardiothoracic surgery) that had consulted on Mrs. Maxwell’s care could not be present. Neither could our patient. Janice Maxwell was being ventilated— breathed for— in ICU room 11. There were important decisions about her care that her family and health care teams needed to discuss this afternoon.
At about two o’clock I had paged Carrick, who was in his second of four weeks with our service, a recently added requirement of Dartmouth’s Hematology-Oncology fellowship program. He had spent the morning seeing patients in clinic with Betty Priest, one of our team’s nurse practitioners, and Laura Rollano, our social worker. I wanted him to join me for the upcoming ICU family meeting.
We arrived at Mrs. Maxwell’s bedside while her family was still gathering in the ICU waiting room. Carrick and I briefly evaluated Mrs. Maxwell. We spoke to her, letting her know who we were and that “we are here to check on you,” and touched her hand and her brow. We looked for any response. There was none. We took note of the five IV drips and the current rates of each medication. Carrick jotted data from the monitors, recording her pulse, blood pressure, oxygen saturation, and the settings of her ventilator. He and I discussed her medication dosages and overall condition with her nurse.
At sixty-nine, Mrs. Maxwell’s health had not been good for many years. In addition to being overweight, she had high blood pressure for which she took two pills daily, and diabetes for which she took two types of insulin. Each morning she injected a long-acting insulin, and when her finger stick glucose tests were high after meals, she gave herself an injection of short-acting insulin. Until now, however, she had never been seriously ill.
Three weeks ago, Mrs. Maxwell developed a fever and generalized achiness. Then, while sitting at her kitchen table clipping discount coupons from the weekend Valley News, she suddenly became blind to anything in her right field of vision and felt dizzy, as if the room were spinning. Her niece, Cici, was upstairs and heard her aunt call out, which Cici described as a loud grunting. When she saw her aunt on the kitchen floor, she immediately called 911 and comforted her until the ambulance arrived and the EMTs (emergency medical technicians) whisked Mrs. Maxwell away to the local emergency department. There the doctor readily diagnosed a stroke, but also astutely recognized the constellation of fever, diffuse aches and pains, and localized neurological deficits as symptoms and signs of endocarditis, a bacterial infection of one or more valves in her heart. The emergency department doctor documented a characteristic rash and small hemorrhages that looked like tiny splinters under Mrs. Maxwell’s fingernails. Blood was drawn for laboratory tests, including bacterial cultures, an IV was started, and she was transferred to Dartmouth-Hitchcock Medical Center.
Mrs. Maxwell’s infection likely began with a sore on the side of her leg. Now deep in her heart, the blood cultures and echo cardiograms revealed clusters of staphylococcus on the cords and leaflets of her aortic valve that were sending infected debris into her circulation— like microscopic bacterial barnacles swept along in the current. Some landed in her brain where they blocked small arteries and caused sudden symptoms. A few of her symptoms— her dizziness and confusion— initially improved over the first day as spasms in the walls of arteries acutely affected by the emboli gradually relaxed. However, these were not simple blood clots or fragments of atherosclerotic plaques. Each embolus was a minute bit of pus. Everywhere they landed a bacterial infection was sown. Each infected arteriole in the brain’s circulation was capable of bleeding. All of this explained Janice Maxwell’s sudden loss of vision, the vertigo, and her waxing and waning level of awareness.
Her brain was not the only organ affected by the acute condition. Some of these bacterial emboli landed in the kidneys and various muscles, and some in the tips of the capillaries in her fingertips. But the lesions in her brain were the most dangerous threats to her imminent survival and long-term recovery.
On admission to the hospital Mrs. Maxwell’s condition was tenuous. She was sleepy and seemed not to notice her loss of vision to her right. When asked by the nurses and physicians at DHMC, she placidly said she understood where she was. Also, whenever asked, she told them she was not in pain. Within forty-eight hours of her admission to DHMC, Mrs. Maxwell began to improve. Antibiotics seemed to halt the progression of the infections in her heart and brain. As the intravenous medications seeped into tissue fluids throughout her body, the infection and inflammation began to wane everywhere else the bacteria had landed. Her fever subsided. Her condition became less immediately life threatening. She was slightly more alert and able to enjoy a few spoonfuls of applesauce and Jell-O.
At 6: 22 the evening of her third hospital day, Mrs. Maxwell suddenly became unresponsive and her breathing became shallow. Her daughter, Evie, and Evie’s husband, Frank, had been visiting in her room and, alarmed by the abrupt change, immediately called for Mrs. Maxwell’s nurse. The hospital’s emergency response team—“ HERT team” for short— was called and she was intubated. The critical care fellow stood above Mrs. Maxwell’s head as she lay motionless on her back. He opened her mouth with his thumb, slid the blunt metal blade of the laryngoscope over her tongue, lifted her tongue until he could see her larynx in the light of the scope, and passed a plastic tube the width of her index finger through her vocal cords and into her trachea. The other end of that endotrachial tube was then firmly connected to a football-size bag of oxygen, which was then held and rhythmically squeezed by a respiratory therapist who walked alongside Mrs. Maxwell as she was moved, bed and all, to the ICU.
On arrival, an ICU nurse took over “bagging” Mrs. Maxwell, while the respiratory therapist reconnected the endotrachial tube to a mechanical ventilator. Ever since— for the last twenty-two days— the ventilator had generated a breath up to fourteen times a minute, every time four and a half seconds went by without Mrs. Maxwell drawing a breath on her own.
A new CT scan showed a new shower of fifteen or more small strokes. Neurologically, this was a major setback. Although people can improve, sometimes surprisingly, in the early days or even first few weeks after a stroke, the cumulative impact of Mrs. Maxwell’s successive strokes portended ill.
From a cardiovascular perspective, she was stable, at least for the moment. But her aortic valve was damaged by the staphylococcal infection and at high risk of failing. And were her aortic valve to fail, the strain on her already stressed heart muscle would likely kill her within minutes. At best, the infection could be suppressed for weeks or even months. Any cure would require surgery to replace her infected aortic valve with a mechanical one (her heart was too large for the bioprosthetic valves made from pig hearts or from human cadavers). Unfortunately, her strokes would preclude the blood thinners that are needed after a mechanical valve replacement to prevent clots and emboli. In this case, anticoagulant medications would almost certainly cause significant bleeding in her brain. It was a damned-if-you-do, damned-if-you-don’t situation. Yet, even without those complicating factors, Mrs. Maxwell’s other health problems, including diabetes and her five foot, three inch, 280-pound body habitus, led the cardiovascular surgeons to believe she would not survive the surgery. In their written consultation, the CT (cardiothoracic) surgery team did not offer to operate, but suggested continued aggressive medical management and offered to reevaluate in several weeks if her condition improved.
As we met in the ICU conference room on this mid-November afternoon, Mrs. Maxwell’s overall medical condition was bleak. Since the day she was urgently transferred to the ICU, she remained minimally conscious. Unlike most patients who require pain and sedative medications to suppress coughing or involuntarily “bucking” the ventilator as it pushes compressed, oxygenated air into their windpipes, she tolerated it all without medication. That was not a hopeful sign.
The large majority of every day she was completely unresponsive, making no movements and lacking any visible response to someone’s voice or to being touched. Occasionally, just once or twice during each of the last few days, she made a facial expression or seemed to grip someone’s hand, but it was hard for any of the doctors or nurses to tell whether the movements were purposeful or merely due to muscle reflexes.
Dr. Geffen, the critical care specialist currently in charge of her care, consulted our Palliative Care Service. She wanted us to assist Janice Maxwell’s family in clarifying goals for her care in the context of her stable but dire condition. On the administrative data collection sheet we use to monitor referrals to our program, “clarify goals of care” is the most commonly indicated reason we are consulted for hospitalized patients. Dr. Geffen hoped we could help the Maxwell family understand and sort through treatment decisions concerning long-term ventilation and medically administered nutrition and hydration that needed to be made.
When I spoke to her, Dr. Geffen described the Maxwells as a devoted family whose members were having difficulty adjusting to the severity of the patient’s condition. It was a particularly difficult situation, she felt, because on any given day Mrs. Maxwell was neither improving nor deteriorating. However, the consensus among the medical teams involved in Mrs. Maxwell’s care was that her prospects for long-term survival were slim and her prospects for recovering any semblance of independent function slimmer still.
I had briefly met Mrs. Maxwell’s daughter, Evie, and son-in-law, Frank, before the afternoon’s meeting. About 6: 20 the prior evening, I had stopped at her bedside, arriving just as they were leaving. They were both wearing jackets over work clothes. Evie wore a Shaw’s supermarket smock and Frank a mustard yellow poplin shirt with his name and the logo of a heating oil company. I introduced myself, briefly explained the role of our palliative care team, and said that I would be involved in the next day’s meeting. They acknowledged the gravity of Evie’s mother’s condition and thanked me for coming by. They apologized for being unable to visit longer, explaining that they needed to get home to their teenage son and household. Brief as it was, the encounter set a friendly tone for the conversations to come.
This afternoon, Carrick and I stood with the Maxwell family for a few minutes in the busy inner corridor of the unit. As an earlier meeting was ending and people filed out of the ICU’s only conference room, I exchanged polite smiles and nods with several nurses, residents, and a housekeeper who passed by. Our palliative care team members are familiar faces and names in the ICU, a result of working closely with the critical care teams.
Connie Pollock, the ICU social worker, had text-paged each of the doctors and the nurse practitioner involved a few minutes earlier, reminding us of the meeting. Now, she and I acted as ushers to get everyone into the room. Members of Mrs. Maxwell’s family took seats around one end of the long, old, blond oak conference table, sitting in sturdy, stackable gray plastic chairs that are ubiquitous throughout the medical center. The walls were a cluttered mosaic of flyers announcing upcoming conferences and a going-away party for a nurse, and quality-improvement project posters with graphed monthly scores of ventilator acquired pneumonias and intravenous line infections from August to October. On a large whiteboard that occupied half of one wall, handwritten diagrams and formulas for calculating vascular resistance gave evidence of a recent teaching session.
As soon as everyone was settled, Connie nodded to me and I spoke.
“Hello, everybody. For those of you I haven’t yet met, I’m Dr. Byock, I am with the Palliative Care Service. Since there are a number of us here, I suggest we start by introducing ourselves to one another.” I turned to the woman on my right who nodded in recognition.
“Thanks, Dr. Byock. I am Evie Chandler, Maxie’s daughter.”
“I am Frank Chandler, Evie’s husband, and Maxie’s favorite son-in-law.” He smiled beneath his Red Sox hat. His comment generated muted chuckles from other members of the family. One muttered it was only because Frank was her only son-in-law.
The light but respectful tone persisted as each person, in turn, family and clinicians alike, gave his or her name and relationship to Mrs. Maxwell and her care. Thus, the meeting began. Each member of Mrs. Maxwell’s family, doctors, and staff introduced themselves in turn. Then it was time for me to get to the purpose of our gathering.
There were two decisions that needed to be made— if not today, then very soon. One concerned whether or not to place a tracheostomy tube for long-term mechanical ventilation. The other was whether to place a PEG (percutaneous endoscopic gastronomy) tube for nutrition and hydration. Both procedures required formal consent. Assuring a clinically sound and ethical process for making decisions about Mrs. Maxwell’s care was the immediate reason for meeting. Of course, it was not just the risks and potential benefits of these procedures that warranted discussion, but also her overall condition, prognosis, and care in general that needed to be discussed. As the facilitator of the meeting, I felt it was important for the discussion to be grounded in the life and person of Mrs. Maxwell.
The clinical teams knew an enormous amount about her organ functions and the intimate anatomy of her brain and heart, but none of us had ever met her before her stroke. We had spoken to her, but never with her.
“We have a number of things to discuss today about Mrs. Maxwell’s condition and at least two treatments to consider. But since I have not previously met you and have never had the opportunity to meet before her illness, I thought it would be helpful to get a sense of who she is. I know that she is widowed and owns a bakery. But that is all. I do not even know where she grew up. So, if you don’t mind, I wonder if we could spend just a few minutes talking about her as a person: her history, what she has done in the remote and recent past, and the things she likes and dislikes.”
Evie began. She described Mrs. Maxwell— whom everyone affectionately called “Maxie”— as a dynamo. Anticipating our unspoken prejudices, she remarked that people were surprised that someone as big as her mother could have so much energy and be in constant motion. She had grown up in Albany, New York, and moved with her family to Vermont when she was in high school. She and her future husband, Elbert, met in their early twenties, when both were working at a summer camp in the Green Mountains. After he returned from World War II, he went to work as a machinist. She baked for several area restaurants, but was primarily mother to the couple’s son and daughter. Elbert died suddenly in 1989. With their children grown and on their own, Janice started her own catering business a year after Elbert’s death. She also found the time to chair the board of the county’s food bank and organize its holiday collection drives.
In decades past, the town’s police chief and school officials knew that Janice and Elbert Maxwell were always willing to take in a troubled child or teenager for a few days— and sometimes longer— until other arrangements could be made. A few of those kids stayed a lot longer and became members of the extended Maxwell family.
Every member of that family present at the meeting described Janice Maxwell as the best mother, aunt, sister, and grandmother anyone could have. She was constantly calling and asking about things they were doing. It was not because she was nosy— she was genuinely interested and very much a part of all of their lives. Her granddaughter and niece said that Maxie knew everything about them: what classes they were taking, when their exams or major papers were due, what they were doing in sports and clubs, even what boys they were dating! Cici said that she had taught Maxie to text and they exchanged at least two or three messages a day.
I thanked them for their descriptions. It had taken all of six minutes, but in that brief time those of us who knew Mrs. Maxwell only as a patient got to see her as a whole and vibrant person. I think we all better understood her family’s predicament: their hope for her to live, their burden of decisions, their pressing fear and looming grief. The few minutes of conversation would enable us to better care for her and support all of them.
I asked the critical care doctors to review Mrs. Maxwell’s current condition and the rationale for both procedures. Dr. Geffen described her condition as generally stable, but was careful to add, “She continues to be critically ill.” She explained that a tracheostomy involves surgically placing a short plastic tube through the skin of a patient’s neck and into her trachea, just below her larynx (or Adam’s apple). The “trach” would protect Mrs. Maxwell’s vocal cords and the narrow portion of her windpipe. The PEG involves surgically placing a plastic tube about the width of a fountain pen through a patient’s abdominal wall to deliver nutrition and hydration directly into her stomach. The consulting neurologists explained that if the infection could be halted, it could take many weeks to see improvement in Mrs. Maxwell’s level of awareness and function, but that she would likely require substantial care for the rest of her life.
No one was suggesting that any of her current treatments be withdrawn— at least not yet. But there was an unspoken awareness that, at some point, more treatment might not be what was best for her. At some point, we would likely need to discuss how she could die. Probably not today, but in all likelihood soon.
Even without stating that a patient is dying, by broaching the possibility— suggesting that it would be reasonable to not escalate treatments further if the condition were to worsen or even consider withdrawing life-sustaining treatments— twenty-first-century doctors are in a difficult situation. People come to doctors to save their lives, not to be helped to die. In these times, doctors may risk being fired by a family for suggesting it would be reasonable to let a person die. People demand second, third, fourth, and fifth opinions. For the persistent, there is always a more famous medical center where they have “real specialists” for this or that condition.
It is not just me and my ilk of palliative care physicians who are at risk of being fired. I have seen highly respected surgeons, intensivists, and oncologists fired from cases by angry patients or families for suggesting that further treatment would be futile. Often care is simply transferred to a doctor willing to persist. If that is not possible, a medical center’s ethics committee gets involved in an effort to reach agreement. Only if this course of action fails to resolve the conflict is the matter brought to a court for a judge to hear. This process can take months. Not uncommonly, the patient dies before any decisions are made.
Savvy and assertive advocacy is a powerful and often essential factor in getting the best care possible. To be effective, advocacy must be rooted in the reality of what is possible and directed at obtainable goals; otherwise, it can be counterproductive.
It is important to make sure doctors don’t give up treatments too soon on someone. Without ill intention or incompetence on the part of doctors, occasionally people with complex but treatable conditions are told that there is nothing else to be done to extend their lives when, in fact, there may be. It is worthwhile to be wary of a single physician’s sophistication, experience, or personal values— or a single medical center’s technical capacity— and not let either unduly limit a patient’s treatment options.
At the same time, it is important to acknowledge the biological limits of treatment. Even the most savvy and assertive individuals who are incurably ill— including those who choose all aggressive treatments— eventually die.
In my experience, when a patient’s disease is clearly progressing and complications are accumulating, the condition itself serves as a counselor for both the ill person and his or her family. By continually eroding quality of life or requiring ever more medications to lessen suffering, a person’s deteriorating state of health eventually brings even the most reluctant of their friends and relatives to realize that the person they love is dying.
I’ve learned it is better to earn people’s trust and stay involved. Our team earns trust, first, by attending to patients’ most urgent needs, such as managing pain or other distress. Second, concomitantly, we build relationships by regularly offering information about the patient’s condition, explaining what it means, and responding to questions in whatever depth patients and families desire. As changes warrant, “explaining what it means” encompasses discussion of the implications of the patient’s current condition on the person’s survival and the prospects for rehabilitation and likely long-term ability to function, along with corresponding caregiving needs. “Explaining what it means” is typically both labor- and time-intensive. That’s okay. Communication is not ancillary or a chore in palliative care; rather, it is the core therapeutic medium of our discipline. The time it takes palliative clinicians to effectively listen, convey information, and respond to questions and concerns is not time taken from our medical practice; it is the practice.
This palliative approach of building trust by managing symptoms, attending to family concerns, therapeutic communication, and continuity is intensive care of a different sort. It is certainly expensive, in terms of clinicians’ time and energy, but it is also better in the long run by being both effective and efficient. In this manner palliative care complements critical care by enhancing quality (and patient and family satisfaction). Expensive as this approach to care is, compared with being at odds with patients and families, and having to resolve and manage conflict, best practices of this sort usually consume a lot less time and resources.
Intensive, lifesaving treatments were essential to the best possible care when Mrs. Maxwell had arrived at the local emergency department, was transferred to DHMC’s emergency department, was admitted to the hospital, and was later transferred to the ICU. However, on the day we met, things were different— or, in this instance, not different enough. Her prognosis was increasingly bleak. Her family was struggling to determine what the best care for Mrs. Maxwell was now. We all were. They still hoped for a cure. Yet within the last week or so, most members of her family had come to realize that it wasn’t going to happen. Still, it is one thing to know that someone you love is dying and another thing to say it.
These were literally life-and-death decisions. Without the ventilator to breathe for her, she would likely die within a few minutes. Without medically administered nutrition, she would die within weeks. Without medically administered fluid, she would die within days. A decision regarding the tracheostomy was most pressing. Eventually the inflated plastic cuff around the endotrachial tube would cause pressure sores and scarring around the lining of her windpipe. As a general guideline, it is prudent to perform “a trach” after two weeks of intubation, and at twenty-two days, a decision was needed: to proceed or to withdraw the tube and, therefore, disconnect her from the ventilator.
I thought to myself that it would have been helpful for her family if Mrs. Maxwell had an advance directive on file. Advance directives— a living will or a durable power of attorney for health care— are legal documents in which people can state their preferences for care if they are seriously ill and not able to make decisions for themselves. If one existed, I could have used it to inform the conversation of the meeting. As it was, in common with nearly 75 percent of adults in America, she had never completed one.
Mrs. Maxwell’s condition and the treatments being considered exemplified the situation these documents were created to address.
A durable power of attorney for health care document formally names a person to speak for you if you are seriously ill and unable to speak for yourself. A living will provides information about your preference for treatments if you become terminally ill and are unable to make your own decisions.
Over time, these documents increasingly have been combined as two sections of single forms. Advance directives are legally recognized in every state. And states generally recognize documents completed in another state.
In New Hampshire, where Mrs. Maxwell was being cared for, by state law a power of attorney document is necessary to confer formal decision-making authority for an incapacitated adult to a spouse, child, or parent. Without such a document, no individual had final authority to make important decisions about Mrs. Maxwell’s treatments. Nevertheless, as physicians responsible for her care, we turned to Mrs. Maxwell’s family to help us clarify goals of care and, as partners in the process, of making these critical decisions. In fact, even when an advance directive exists, and while recognizing the authority of the individuals appointed in the document, we try to foster agreement among participating family members in defining each patient’s goals of care.
I decided to see if Mrs. Maxwell’s family had a sense of what she would have written in an advance directive. I asked what family members thought Mrs. Maxwell would say about her care, if she could speak for herself today.
Evie looked down at the table and chuckled to herself. Then she raised her head and spoke, recalling an occasion when her mother had talked about a neighbor who had suffered a paralyzing stroke. “I remember Mom said that she wouldn’t want to live if she couldn’t cook, eat, and ‘wipe my own ass!’ ” Hearty laughter signaled broad agreement.
Ellis, Evie’s brother, said that he was sure their mother would think that lying in an ICU this long was ridiculous and would want to be put out of her misery. Frank and Ellis’s wife both nodded. Ellis Jr., who I guessed to be in his mid-twenties and had explained during the introductions that he had lived with Maxie during his senior year in high school, agreed that she would not want to be kept alive on machines.
For a few minutes, there was a gathering consensus that Mrs. Maxwell would prefer to die gently and I thought that perhaps today was the day. But then her niece, Cici, who had been quiet since the discussion of Mrs. Maxwell’s history, spoke up.
“It isn’t right just to let her die,” she said softly, looking down at her hands held together resting on the conference table. “Only God can take a life.”
The comment blew through the room like a winter wind through an open door. Around the table, the atmosphere suddenly chilled and people gathered their shoulders to their necks and looked down.
I later learned that Cici had battled alcoholism and drugs during her own teenage years. A little over two years ago she joined AA and had been clean and sober since. She had embraced Christianity as part of her 12-step program. Maxie had been a big part of Cici’s recovery.
Evie broke the uncomfortable stillness. “Cici, no one is talking about killing Maxie. But she is not getting well.”
“But she still can. They haven’t said she absolutely can’t get better. Other people in her condition have gotten better— even after years in a coma. Miracles happen, you know.”
Miracles do happen. Sometimes against all odds and without explanation deathly ill people suddenly become better. There’s no denying it— and I wouldn’t want to. It seems the nature of miracles that they happen rarely. Still, who is to say a miracle could not happen here?
If I had known the Maxwell family better— if I had had the time to earn their trust— I might have taken a more assertive tact. I might have asked Cici to consider that Mrs. Maxwell could have died abruptly that morning in their kitchen and that her initial survival was already a miracle. I might have suggested that the past few weeks have given her and her family precious time to spend with her aunt and the chance to support one another. If I had known Cici better and had been more aware of her devoutly Christian beliefs, I might have asked her to share with me her understanding of how people whom God loves eventually die. I might have gently confirmed that she believed that God loved her aunt Maxie. When she said, “Yes, of course God loves her,” I would have asked Cici if it were possible that God’s will was already being done?
But on this day, having just met them all, saying any of these things risked going too far. The question of miracles effectively foreclosed any consideration of allowing her to die today.
The tenderness of Cici’s plea and her family’s need to support her in her devotion to Maxie were apparent. I tried to assure Cici that no one was trying to play God or in any way lessen her aunt’s chances of getting well. I said we were all trying to respect her wishes, recognizing that even with intensive care Maxie was at very high risk of dying. Cici made eye contact with me briefly, but mostly looked at her hands resting on the conference table. She did not seem angry, just sad and hurting.
As the meeting drew to a close, the family and we assembled professionals came to the decision to give treatments a little more time and jointly agreed to proceed with the tracheostomy and PEG tube. Both would be done in the operating room the next day.
With those major decisions made, I asked if there were any limitations on her treatments that the family would want to set. I specifically discussed CPR and the use of vasopressors, medications that tightened arteries and made the heart beat faster and stronger, but at the cost of straining the heart and other organs. Her family— with Evie and Ellis taking the lead— decided that treatments should not escalate any further. This meant that if her blood pressure dropped due to a new infection or sudden heart problem, she would not be treated with “pressors.” If her heart suddenly stopped, no one would push on her chest and no electrical shocks would be administered to her heart. Cici sat in quiet acquiescence during that part of the discussion. She seemed satisfied that she had prevailed in a room of her elders and was protecting her aunt from a premature death.
I assured members of her family that our team would be checking on Mrs. Maxwell daily and doing whatever we could to enhance her comfort. I was scheduled to be the physician on service this Thanksgiving, so I said I would be looking in on her personally. I asked if they would like us to bring a CD player and her favorite music to her room. Yes, they said that would be good. “She loves Elvis Presley and Johnny Cash,” Ellis said. “And anything by Garth Brooks,” Cici added.
“Okay,” I said, “I know we have some Elvis and Johnny Cash. I will have one of our volunteers bring a boom box to her room and a selection of music. Feel free to bring more. Please also bring a few photos of Maxie if you have them. I would love to see a picture of her in happier times. Pictures will help all of us to know her a bit better.”
We agreed and arranged to meet again at three p.m. on the Tuesday afternoon after Thanksgiving. I thanked them all for coming and we slowly dispersed.
I agreed with the decision we reached as a group, but I was not entirely at peace with what had occurred. I wondered what the meeting looked like from Carrick’s perspective.
He and I would discuss the content and process of the meeting later in the day and I reflected on the things I wanted him to learn from what had transpired. The meeting had included key elements of physician-family communication and shared decision-making. Well and good. Yet the Tuesday after Thanksgiving was twelve days from now; it seemed a very long time in the future. I knew, after all, that Mrs. Maxwell was not going to survive. It would be a fair criticism to say that in concluding the meeting as we did— as I did —we had kicked the can down the road. It would be easy to argue that the operations she was about to undergo were pointless. Carrick and I would discuss the collective, resource implications of this situation, the other patients who might benefit from that ICU bed— since as usual, the ICU was full— and the thousands of people across the country in similar predicaments. There are 3,228 hospitals with ICUs and a total of over 67,000 ICU beds in our country, and many are occupied by people who have been critically ill for weeks on end.
I planned to explain to Carrick my assessment that being more directive today would have been heavy-handed. To some of the family, if only out of loyalty to Cici, it might have felt rushed. To Cici, it might have felt cruel. Of course, as a physician in such situations, I never know where the breaking point lies, where trust will fracture, giving way to conflict, unless I take a step too far.
In fact, despite the pressure on health care resources, we could continue to treat Mrs. Maxwell for her kidney failure, respiratory failure, and heart failure, even if it were only to give her family time to adjust to the reality that she could not get well. In our hospital, on this day, as in hospitals across the country, there were sufficient resources to do so. The financing of American health care well supports such treatments. In many parts of the world ICU beds and ventilators are in scarce supply. Had Mrs. Maxwell been intubated at all in those countries, it would be necessary now to remove life support and allow her to die. But not in our hospital, not in the United States, not today. Not yet.
This clinical scenario is familiar to anyone who practices in hospitals and ICUs, particularly within referral centers. Of course, Mrs. Maxwell’s situation is unique. She is a one-of-a-kind person with a unique life story. Still, the basic set of circumstances that had befallen Mrs. Maxwell and her family occurs multiple times a month in our medical center’s ICUs and multiple times every day in hospitals across the United States.
As my mind’s eye scanned the two main ICUs at Dartmouth-Hitchcock, I saw snapshots of several other patients and families who were currently in similar predicaments:
WANDA SMITH is twenty-seven years old. A week ago she had an operation to remove a large tumor that had wrapped around her uterus, bladder, and rectum. There is now no sign of cancer, meaning she is likely cured. It would be a remarkable success, except that after the twelve-hour surgery, she has yet to wake up and is still not breathing on her own.
DONALD GILBERT is a seventy-five-year-old husband, father, and grandfather who suffered a stroke while shaving one morning. A clot formed in his atherosclerotic middle cerebral artery, one of the main branches of the carotid artery, and caused mechanical blockage and spasm of the arteries beyond the clot. Thrombolytic medications administered by the stroke team in the emergency department failed to improve his condition. He cannot speak and makes few intelligible responses. Mr. Gilbert has been able to come off the ventilator twice. Both times he breathed on his own for fewer than twenty-four hours before a sudden deterioration— likely a mucus plug in a bronchus or aspiration of saliva— resulted in the HERT team being called and the endotrachial tube being urgently reinserted. Now, as his older brother has observed at his bedside, “he looks tuckered out.”
IDA SAMUELS is sixty-two and has battled lung cancer for the past three and a half years. Our team knows her well and has followed her in the clinic and during hospitalizations in conjunction with the thoracic oncology team. Mrs. Samuels has never wanted to discuss her wishes for care if she were to die because she felt doing so would violate her commitment to being positive. For the same reason, she has never filled out advance directives. She was a highly motivated patient. As soon as cancer was diagnosed, she quit smoking. She went through aggressive chemotherapy and respiratory therapy, and had half of her left lung removed. Within a year, the cancer returned in her lung, lymph nodes, and bones. That was when she was referred to us, nearly eighteen months ago. She had already lived much longer than most people with similar conditions. Since then she has spent weeks in the hospital from pneumonia that kept recurring due to narrowing of the bronchus— or windpipe— to her remaining left lung. Seven weeks ago, using a fiber-optic bronchoscope, a pulmonologist placed a stent, which widened the opening. Now, however, pneumonia was back with a vengeance and she was back in the ICU. In addition to the pneumonia, there is infected fluid around her lung— a condition called empyema— which required a chest tube to be placed through her skin, between her left lower ribs, to continually drain the space between her lung and chest wall. She is on a ventilator, sedated, and paralyzed because she was obviously suffering and thrashing against the ventilator. She has an associated bacterial bloodstream infection that is keeping her blood pressure low and requiring low doses of vasopressor medications.
KEVIN HARDY is a forty-two-year-old man who had a sudden cardiac arrest at the gym. Bystanders performed CPR and the EMTs were able to reestablish a pulse. Once at DHMC he underwent emergency cardiac catheterization. A cardiologist was able to locate the blockage and open the clogged artery with a small balloon and place a small expansile stent that looks like a Chinese finger trap. The angioplasty was successful. His heart problem was solved. To minimize swelling and damage to his brain, his body was cooled to 33 ° centigrade (91.4 ° Fahrenheit). Two days later, after slowly rewarming him to 37 ° centigrade (98.6 ° Fahrenheit), he remains densely comatose with no sign of neurological recovery.
AND THEN THERE IS MRS. WALLACE in one of the slightly larger, corner rooms. Her story and her husband’s devotion had already made an indelible mark on me and on many of us taking care of her. At age seventy-eight Mrs. Wallace had made good use of twentieth-century medicine. She survived breast cancer in 1989 and went on to have bilateral hip replacements and coronary artery bypass surgery. She played golf and snowshoed every year and felt well until early last spring— it might have been in mid-April, as she told the intern who took her history on admission to the hospital. She had felt tired for days on end and lost her appetite. Blood tests her doctor ordered showed an alarmingly high white blood cell count and a bone marrow biopsy confirmed that she had a treatable lymphoma.
During the rest of the spring and early summer Mrs. Wallace successfully completed three rounds of chemotherapy, tolerating recurring episodes of mouth sores and loss of hair. By mid-summer she felt like her old self. However, in August she began slurring her speech and dozing off in the middle of the day, even at meals. Her thyroid was normal. Scans of her brain showed some nonspecific white matter changes. A lumbar puncture— also called a spinal tap— confirmed that there was lymphoma in her cerebral spinal fluid and brain. It was no longer curable.
By then Mrs. Wallace was able only to open her eyes briefly when her name was called. She occasionally clasps a hand placed in hers. Her husband of fifty-seven years, retired Army Colonel William Wallace, lovingly cares for her at their home with the help of privately hired nurses’ aides. He calls the ambulance whenever she runs a fever and, as a result, she has been hospitalized four times throughout the late summer and fall.
Mrs. Wallace had a PEG tube placed nearly three weeks ago. She has been in the hospital ever since. The procedure of placing the PEG tube went smoothly. However, Mrs. Wallace’s body would not tolerate even a fraction of the amount of nutrient solution (similar to baby formula) required to meet the normal caloric needs of a person of her height and weight. Her intestinal tract seemed inert, unable to move or absorb the liquid being dripped into her stomach. Whenever the rate of formula was increased, she developed diarrhea. She also ran “high residuals,” meaning that fluid was just pooling in her stomach and not moving through. Additionally, and more problematically, despite being kept propped at 30 degrees or higher, Mrs. Wallace developed recurrent episodes of coughing that were clearly the result of formula refluxing up her esophagus and down her windpipe. Now she is back in the ICU with florid aspiration pneumonia, once again intubated and on a ventilator. Mr. Wallace is a constant presence at her side.
Each of these cases is unique— one-of-a-kind individuals and circumstances. Yet there are discernible themes.
To remain alive, each of these people will need protection of their airway, and very likely prolonged ventilation, as well as medically administered nutrition and hydration. In each case the chance of recovering function is remote. It is not just that the prospects are slim that the ill person will work, drive, or even walk again. The chances are infinitesimally small that any of these people will ever again perform the most basic elements of self-care: eliminating, washing, brushing one’s own teeth, combing one’s own hair, and feeding oneself.
Their dependency does not diminish their worthiness of our caring, but it is relevant to the medical treatment decisions that need to be made. Dependency alone is not a reason to withdraw life-prolonging treatment. Quadriplegic people are dependent on others for the most basic elements of care, but most achieve a satisfying “new normal“ and many lead active, productive lives. In contrast, none of the ICU patients I just described will ever again enjoy a meal or a conversation, read a book, watch a movie, surf the Web, or take a drive. The distinction is valid. People may disagree about what quality of life is worth sustaining and there is far from a social consensus. But for each individual, it is relevant to consider what quality of life the person, himself or herself, would consider worth sustaining. I contend that the combination of a life-threatening illness, complete physical dependence, and a quality of life that is devoid of value to the person whose life it is constitutes reasonable rationale for decision-makers to allow a person to die.
Of course, to families in pain things like ethical analyses and rationale, clinical categories and prognostic indicators all seem irrational and irrelevant.
Before his stroke, Mr. Gilbert’s family was looking forward to spending Christmas together in Hilton Head, a dual celebration of the holiday and their fiftieth wedding anniversary. Mr. Hardy, the forty-two-year-old man “saved” by CPR, is the principal of a middle school in New Hampshire’s Lakes Region. After his cardiac arrest, the entire town organized vigils and meetings and draped trees and telephone poles with white ribbons in his honor. Wanda Smith, who has yet to wake up from her cancer surgery, is the mother of a twenty-two-month-old son. Her husband and parents and brothers and sisters are bereft, cannot envision a future without her, and rarely leave her side.
Mrs. Samuels’s son and his wife and young daughter visit every weekend, though they only stay for a short time. They live in Connecticut and have been kept at a distance both literally and figuratively by his domineering mother. Now that her lung cancer has progressed and she is insensate in the ICU, they feel conflicted. They agree that she would never want to give up, but they cannot bear to see her suffer and feel that in her current physical state, she is already dead. Colonel and Mrs. Wallace have six children, eight grandchildren, and two great-grandchildren, at least four of whom are in the ICU waiting room at all times. The colonel is always at her side, stroking her arms and legs with lotion and talking to her softly. Every day, with an almost childlike innocence that is in contrast to his engineering accomplishments, he asks the nurses and doctors about new treatments for lymphoma that friends have suggested or he has read about.
Often I think that if a family could hear the voice of the person who is critically ill, it would help them come to a sound decision. But even that would not be a panacea. Making these decisions is sometimes just as hard when people can speak for themselves.
Carrick and I stride past the corner room of Ralph Barker, a chronically critically ill patient in the ICU who is also in a difficult situation, except that Ralph makes his own decisions. I met Ralph (he doesn’t like to be called Mr. Barker) over two months earlier, when the Palliative Care Service was asked by the Critical Care Service to help Ralph and his family clarify goals for his care.
Ralph is fifty-six years old, just a few years younger than I am, but a role of the genetic dice left him diabetic, prone to autoimmune diseases, and chronically ill. His kidneys stopped working when he was forty-nine and his lungs are scarred from inflammation and repeated infections. He has chronic colitis with diarrhea and ulcerating skin sores. He needs daily dressing changes to ulcers on his legs and back, daily colostomy care, and kidney dialysis three times a week. He’s mostly confined to bed or a special wheelchair, because he lost his right leg to a bone infection a few years and more than two hundred pounds ago. Despite all this, he had been enjoying his life at home, mostly thanks to his devoted, selfless, and utterly exhausted wife, Sallie.
One day in early September, Ralph suddenly became septic; a profound infection dropped his blood pressure and ability to breathe. He almost died in the ambulance, but after two weeks of antibiotics, mechanical ventilation, and round-the-clock nursing care, Ralph is once again stable. Sort of. Now he has a tracheostomy and still needs a ventilator at night to breathe. Ralph isn’t dying today, but he is dying.
He is also suffering. Above all, Ralph says he doesn’t want to die. He’s never wanted to think about dying and hates when we bring up the subject. He’s never completed an advance directive giving anyone formal authority to speak for him if— but really it is when —he becomes unable to speak for himself.
Every time I see him, he pleads for two things: for me to prescribe a medicine to make him feel better and for me to send him home. Panicked anxiety makes him feel breathless even when his oxygen levels are fine. Unless he’s somnolent, he craves more doses of sedative medication, but that just makes his breathing worse and makes the prospect of going home an ever-more-distant mirage.
He’s never told Sallie or any of his doctors how he would want to be taken care of if he couldn’t get well. It is no wonder she feels overwhelmed. As if death were optional, Ralph wants everything possible done to prolong his life, including CPR when his heart eventually stops. He repeatedly tells us he wants to live and go home. Instead, he’s confined to the ICU by failing organ systems and the choice he’s made to accept technological support to stay alive. In reality, state-of-the-art treatments can’t restore anything resembling physical health for Ralph. Since he isn’t interested in exploring emotional or spiritual ways through his thorny predicament, all any of us seems able to do is prolong his dying.
In her book Refuge, Terry Tempest Williams tells the story of her mother’s life with illness. One day, during the last months of her life, Williams’s mother reflected, “Dying doesn’t cause suffering. Resistance to dying does.” I think of this insight often as I meet with and listen closely to people like Ralph, as well as families of people who are critically ill.
People with a sick relative or close friend sometimes ask me how someone would know if they and their family are in this sort of predicament in which resistance to dying is causing suffering. While I am loathe to give advice that can be misapplied to a particular person or specific condition, there are some conservative generalizations I can offer.
If your husband’s cancer has continued to grow after the first surgery and radiation, and two or three successive chemotherapy regimens, you may be getting close. The hard truth is that oncologists use their best drugs first. The answers to other questions can help estimate how close: Has the cancer spread to multiple places, including one or more of his bones, liver, lungs, or brain? Has he developed blood clots, despite being on anticoagulants? Has he lost weight? How many weeks has it been since he had an appetite? How much help has he been needing to get around, climb stairs, even bathe?
If your mother has been in the ICU for two or more weeks and things are not getting progressively better, you may be in this predicament. Long ICU stays tend to be worrisome from a prognostic standpoint. Is she requiring a ventilator, or CVVH (continuous kidney dialysis) or vasopressor medications? When a patient has been in the ICU for a long time, each of these treatments is a telling indication of persistent organ failure. Count the number of “lines”— IV, arterial catheters, internal monitors— the number of tubes training internal cavities, the number of wound dressings, the number of antibiotics, the number of sedatives she requires. The higher the numbers, the more seriously ill people are.
To be clear: I am generalizing and there are exceptions to everything I have just described. However, if these situations sound familiar, you and your family may already be faced with balancing the quest to live against the quantity of suffering that accompanies resistance to dying.
People who are physically healthy avoid talking about dying, partly by assuming it will be easier to discuss such matters “when the time comes.” Yet, people who are sick and their families discover that it doesn’t always get easier. As illness progresses, it sometimes gets harder. Sometimes even bringing the subject up can feel disloyal, a betrayal of a pact to get better.
These are as serious and unfunny as any situations I know. Yet the most apt description I know for this predicament comes from the late comedienne Gilda Radner. Her 1970s Saturday Night Live persona, Roseanne Roseannadanna, famously observed about life in general, “If it’s not one thing, it’s another thing. But it’s always something.” Years later, she was diagnosed with ovarian cancer, underwent extensive treatments and experienced a sustained remission, and became an outspoken, effective advocate for people living with cancer. She chose It’s Always Something for the title of her book about living with cancer. Gilda Radner died of the disease in 1989.
Everyone dies of something. Every time a new complication develops, the doctors will assign it a name, giving you another diagnosis. It may be a new infection, or a new source of bleeding, or clotting (and sometimes both at once). Each diagnosis has a potential treatment, which the doctors will dutifully tell you about— if you haven’t already looked it up online.
Yet when someone’s underlying illness is progressing or their general condition leaves them weak and with little chance of turning things around, every decision to treat a potentially lethal problem means the person will have to eventually succumb to something else. The question then becomes: What would be an acceptable way for you— or the person you love so much— to die?
That’s the question all of us are eventually called to wrestle with for ourselves and for the people we love most in life. As a palliative care physician, it is my job to help people in these unenviable situations to clarify options and make whatever decisions are best for them.
Carrick and I walked from the ICU through automatic double doors onto an inner, staff-only corridor. Except for a housekeeper at the far end of the hall, we were alone. For a while we walked without speaking, each of us still pondering the meeting and wondering what we would say to the other. About a hundred yards from our office, I said, “This job will keep you humble.”
Carrick laughs respectfully and after a few steps farther, adds, “But then, as I have heard you say, ‘We are just here to serve.’ ”
“Aha! You have been paying attention.” I laughed with him. Humor and camaraderie are good tonics for irony. As a physician, some-times being “here to serve” means offering the best of one’s mind and heart without being attached to what happens, at least not overly attached.
“You know the other thing I often say? ‘It is not about us,’ ” I say. It is a remark without irony, one best made in private— senior physician confiding to a senior physician-in-training. I spoke in the tradition of a profession that has through the centuries passed the craft and art of practice from one generation to the next.
As a doctor teaching other doctors, I deliberately call attention to the pitfall of developing an inflated sense of our own importance. Doctors are important. But ultimately, it is not about us. After all, the sole rationale for our profession is the well-being of others, primarily the patients we serve. At the same time, I try to instill— and model— the value and capacity of being gentle with oneself. Ultimately, no human being can fully control what happens to another. Some things are beyond the grasp of medicine. We can, however, be of service. We can show up, bringing whatever benefits science and technology have to offer, while never losing focus on the persons we serve. That has to be enough.
Sitting around the conference table in the Palliative Care office nibbling on grapes and cookies left over from a No One Alone volunteer meeting, Carrick and I debriefed each other about the dynamics of the meeting. I explain why I said what I did— and why I didn’t say more. It had been a hard conversation for Mrs. Maxwell’s family to have. Carrick also had the sense that if we had applied directed pressure, we would likely have pushed Cici beyond an emotional breaking point and possibly evoked anger in others. Tincture of time was called for.
Family members I have spoken with months after such meetings have said that during the discussion of treatment decisions— with the very life of their wife or husband, mother or father, sister or brother, son or daughter hanging in the balance— they felt their head spinning, their heart breaking, and their world coming apart. Some have told me that they could not hear what was being said. Some could hear the information but only understand it intellectually, or the words were clear but it felt unreal. One man described feeling unsteady, as if walking in a canoe, unable to take a step or make a decision one way or the other.
That Tuesday after Thanksgiving never came for Mrs. Maxwell. Instead, her family and doctors reconvened at one p.m. on Sunday of the holiday weekend. At about 3: 45 Friday morning she stopped triggering the ventilator at all, and her legs and arms stiffened and rotated into a “decerebrate posture,” well recognized by doctors and nurses as an ominous sign. It signaled that pressure was rapidly building inside her head causing downward force on her brain and pushing her brain stem against the bony ridge of the circular opening at the base of her skull, which, in turn, causes normally autonomic functions like breathing to stop. The process is called herniation, and it is lethal.
The neurosurgery resident on call was urgently paged to consult and administered IV mannitol, a medication that draws fluid out of the brain, dehydrating it to decrease swelling. An emergency CT scan showed new bleeding and swelling in the right side of her brain, which shifted the rest of her brain downward and to the left. The neurosurgeons then emergently took Mrs. Maxwell to the operating room and installed a drain through her scalp and skull and into the pocket of blood in the right parietal lobe of her brain to stem the buildup of pressure. This halted the impending herniation of her brain and her imminent death.
Evie had been called at 5: 20 Friday morning with news of her mother’s turn for the worse and, in spite of the group’s decision not to escalate treatments further, gave permission for the scans and subsequent surgery. I saw Evie later in the morning, when her mother had just returned to the ICU from the operating room, and again on Saturday afternoon after completing the rest of my rounds. She had taken a leave from her job managing the deli of a large supermarket and was spending most of the time at the hospital. Ellis and his wife and son were visiting as well. Dr. Geffen was no longer the critical care attending physician for Mrs. Maxwell, but I spoke with Dr. Rashid, the critical care fellow, who knew Mrs. Maxwell’s case and her family well, and we arranged with the family to meet on Sunday afternoon.
We met in the same conference room, amid telltale evidence of a late Saturday night staff meal of pizzas and sodas. I quickly removed empty food containers and unopened Diet Pepsis from the table and pushed the overflowing trash container into a corner. This time the only clinical staff at the meeting were myself, Dr. Rashid, and Jolene Hunter, her ICU nurse. The Maxwell family was well represented by Evie and Frank, Ellis and his wife, Ellis Jr., and Cici. In the past two days Evie and Ellis had been carefully updated regarding the changes in her neurological condition, the scans, the medications she had received, and her surgery. They knew that her prospects for recovery were now nonexistent.
After briefly reviewing the things that had been done to maintain her physical condition in the past week, I mentioned that, in addition to all the treatments, we were also doing a few things intended to comfort and honor Mrs. Maxwell.
Chaplains were seeing her every day and praying over her. Her own minister had visited twice— and was here now, having driven over after their congregation’s Sunday service. Our No One Alone palliative care volunteers were also visiting daily and making sure that the CD player was working and that there was music playing in her room. A “Get to Know Me” poster was taped on a floor-to-ceiling sliding glass door that formed the wall between her room and the common space of the intensive care unit. On it her family had written that she likes to be called Maxie, and next to “occupation” had written, “the best baker and mother in the world.” The rest was left blank except for at least a dozen photos of Maxie in happier times. She usually had an apron on in the pictures, often standing in a kitchen or behind a dinner table. There were holiday pictures and one of Elbert and her at a fair. In most pictures there were several children, most of whom were clearly unrelated. On an old photo that had been obliquely taped in place, she appeared to be in her forties and was sitting behind a much younger, trimmer Frank on a motorcycle, holding her son-in-law tightly as he grinned to the camera.
I had looked at every photo and now commented on the richness of their family life. “I can tell that she will be sorely missed,” I said.
Frank piped up in a groan. “Doc, she is already missed,” he said.
There was a moment’s silence, and then Ellis Jr. laughed, which caused the rest of the family to giggle self-consciously. The medical professionals in the room sat quietly clueless until Evie explained the inside joke. Maxie was known to bake eight to ten pies for Thanksgiving dinner; there would be pumpkin and peach and two kinds of apple and coconut cream pies and at least one of Frank’s favorite, a pecan– maple sugar pie. This Thanksgiving he had to settle for just apple and pumpkin and he had grinned and borne the hardship.
The moment’s levity did not diminish the solemnity of our discussion. Though it was expressed with humor, Frank’s statement expressed the stark fact that Maxie was irreplaceable. Things would never be nearly the same. In so many ways, she was already gone. They would still be a family connected in their shared loved of Maxie. Even the foster children she helped raise and friends who were not related to Maxie by blood or marriage would always share a bond of their love for her and how important she had been in their lives.
“When we last met, we had planned to come together again on Tuesday and I expected that we would have difficult decisions to make about how long to continue intensive treatments. As it happens, I think that the biology of her condition is now making those decisions for us.” I paused before concluding, “It is fair to say that nature itself has declared that Mrs. Maxwell is dying.”
In discussions of this sort, I use the word “nature” knowing that for religious people in the room, it may be heard as a synonym for God. That’s okay. I only presume to talk about God with patients if I know what they believe. Otherwise, I usually ask them to tell me about their beliefs, if it would be helpful for me to know. In learning about their beliefs, traditions, and the language they use, I can often communicate with and support people in little ways that can mean a lot.
In that spirit and hope, I spoke softly to Cici. “I know that you have felt that God was looking after Maxie and that he had a plan. Do you think it is possible he is calling her home?”
“Yeah. I think Maxie is tired and she is ready to go to heaven,” she said. Her expression was sad but composed. She was not angry and seemed resigned.
“So, I sense people here are in sad agreement that the time has come to allow Mrs. Maxwell to die.” I paused and looked at each person in the room. Nods and eye contact affirmatives all around. Except for myself and Dr. Rashid, people were touching or hugging the person next to them.
“I want to assure you that she will not feel distress as the ventilator is stopped and endotrachial tube is removed. Her death will be gentle. We will medicate her with extra doses of pain medication and a sedative— and will be standing by if there is any hint of discomfort. Sometimes people live for minutes to a few hours after a ventilator is stopped, but in this particular situation, I expect she will die very quickly.
“We are not in a rush to do this. If you wish to take a few hours to have family or friends visit, please do.”
Evie and Ellis both had a list of people whom they had notified and had been coming by throughout yesterday, last evening, and this morning. They felt that they would need only another few minutes at her bedside with her, once again, the center of the family. Their minister would say a few prayers. They did not want to be present when she died.
This meeting lasted just twenty minutes.
Forty-five minutes later, I accompanied Dr. Rashid during the procedure to withdraw the ventilator from Mrs.Maxwell. We had not worked together in this manner before. As a senior physician and as an educator, I wanted to make sure before proceeding that Dr. Rashid had a clear understanding of the procedures. He and I reviewed in detail what medications we would be giving, in what doses, and the sequence of steps we’d take in discontinuing the ventilation.
While Mrs. Maxwell’s family and minister visited and prayed at her bedside, Dr. Rashid and I met with Jolene, her nurse, and a respiratory therapist outside her room. We discussed what we expected to occur and agreed on the doses of fentanyl, a narcotic pain medication, and midazolam, a Valium-like sedative, to use and made sure extra doses were immediately available if needed. Since family would not be in the room, we decided to leave the cardiac monitor on to follow the electrical activity of her heart, while turning the audible alarms off.
Her family left her room and headed for the waiting room.
As Dr. Rashid and I stood by, Jolene administered the medications and the respiratory therapist turned off the ventilator and disconnected the ventilator from Mrs. Maxwell’s tracheostomy tube. She died peacefully. There was no hint of struggle, no grimace, twitch, or moan. The only perceptible change as the cardiac tracings went from a sinus rhythm at 86 beats per minute to asystole— no beats at all— was an abrupt change in her color from flesh pink to steel gray.
As Jolene cleared away now extraneous equipment from around Mrs. Maxwell’s bed, Dr. Rashid and I went to the waiting room and informed Evie, Ellis, and the other members of her family that she had died peacefully. We invited them to spend time with her body if they wanted to do so. [33-65]
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