End of the Line in the ICU

End of the Line in the ICU


Last year I graduated from nursing school and began working in a specialized intensive care unit in a large academic hospital. During an orientation class a nurse who has worked on the unit for six years gave a presentation on the various kinds of strokes. Noting the difference between supratentorial and infratentorial strokes—the former being more survivable and the latter having a more severe effect on the body’s basic functions such as breathing—she said that if she were going to have a stroke, she knew which type she would prefer: “I would want to have an infratentorial stroke. Because I don’t even want to make it to the hospital.”

She wasn’t kidding, and after a couple months of work, I understood why. I also understood the nurses who voice their advocacy of natural death—and their fear of ending up like some of our patients—in regular discussions of plans for DNRtattoos. For example: “I am going to tattoo DO NOT RESUSCITATE across my chest. No, across my face, because they won’t take my gown off. I am going to tattoo DO NOT INTUBATE above my lip.”

Another nurse says that instead of DNR, she’s going to be DNA, Do Not Admit.

We know that such plainly stated wishes would never be honored. Medical personnel are bound by legal documents and orders, and the DNR tattoo is mostly a very dark joke. But the oldest nurse on my unit has instructed her children never to call 911 for her, and readily discusses her suicide pact with her husband.

You will not find a group less in favor of automatically aggressive, invasive medical care than intensive care nurses, because we see the pointless suffering it often causes in patients and families. Intensive care is at best a temporary detour during which a patient’s instability is monitored, analyzed, and corrected, but it is at worst a high tech torture chamber, a taste of hell during a person’s last days on earth.

I cared for a woman in her 90s whose family had considered making her a DNR,but decided against it. After a relatively minor stroke that left her awake but not lucid, Helen* went into kidney failure and started on continuous hemodialysis. Because she kept pulling out her IV lines and the feeding tube we had dropped into her nose and down to her stomach, we put boxing glove-like pillow mitts on her hands. When I approached with her medicine, Helen batted at me with her boxing gloves, saying, “NO. STOP.” She frowned, shook her head and then her fist at me. Her wishes were pretty clear, but technically she was “confused,” because when asked her name, the date, and her location, she failed to answer.

During the next shift, Helen’s heart stopped beating. But despite talking with the doctors about her advanced age and the poor state of her health, her family had nonetheless decided that we should “do everything we can” for her, and so Helen died in a frenzy of nurses pumping her with vasopressors and doing chest compressions, probably cracking several ribs.

That was a situation in which a patient’s family made a decision that probably caused Helen to suffer and did not help her. But there are circumstances where it is the healthcare team that chooses to push on with intensive interventions. And there are circumstances where bureaucracy, miscommunication, and the relatively low priority, among very busy physicians, of making decisions about how far to pursue medical care cause patients to linger in the ICU weeks past the point when any medical professional thought meaningful recovery was possible.

Consider another example, of a patient with advanced cancer, in this case an elderly woman with a well-informed husband who knew his wife was dying and that she didn’t want to end her life with an extended ICU stay. After her last tumor resection this woman developed an infection, and during a meeting with her husband the attending physician explained that the main problem we were immediately dealing with was the infection, which was bad and could well be something she would not recover from. The patient’s husband explained that he knew that his wife didn’t want to be there and that her underlying diagnosis plainly meant that her life was going to end, that they both understood this and didn’t want to painfully draw things out. Then he asked if he had any decisions to make—in effect being as blunt as he could without simply insisting that they withdraw care then and there.

The doctor said no. She said that the patient needed to complete the course of antibiotics to see if the infection could be cured, after which they could approach the question of whether to continue with intensive medical care. I imagine the doctor saw some distinction between letting the patient die of her primary, terminal diagnosis and letting her die of a complication. So the husband’s efforts to stick up for his wife went unheard, and she stayed in the ICU, comatose, for about two more weeks—quite the opposite of her stated wish—before everyone agreed to let her go.

On the other side of the spectrum are the poor forgotten patients, the ones who linger because nobody will speak up for them and the medical team is not legally allowed to decide to do anything short of maintaining life, day after day. One man with a severe stroke languished over a month while his family members dodged the responsibility of visiting, witnessing his condition, and making a decision about his care.

Every morning the health care team rounded on him and we discussed the various states of decay of his body—he had severe diarrhea, frank blood in his urine, and ventilator associated pneumonia—and then moved on to discuss the efforts being made to contact his family and impress upon them the need for action. The ICU had nothing to offer him, and someone needed to choose: he would either have a tracheostomy and permanent surgically placed feeding tube in order to be moved to a ventilator dependent nursing home, or have his care withdrawn.

Similarly, we had a homeless woman with a severe brain injury. CT scans of her brain showed an undifferentiated mass of swollen tissue—this is very bad. We were draining cerebrospinal fluid out of her head because the swelling had obstructed the flow of this fluid, causing hydrocephalus and increased pressure within her brain. Her pupils did not react to light, and she had no corneal reflexes—that is, when you touched her eyeball, she didn’t flinch. What kept her from being brain dead was the fact that her ventilator was set to “pressure support,” meaning that she initiated breaths, and she still had a cough reflex.

The first day I took care of her, when she’d already been there over a week, I was told that there was a plan to seek a court-appointed guardian to make her health-care decisions. Any friend or relative could have become her decision maker, but this woman was alone. A few days later—why did it take that long?—the social worker presented the patient in court and a lawyer became her official guardian. This lawyer was unwilling to withdraw care. Further, he was unwilling to make the patient a NO CODE. If her vital signs became unstable and she started to die, we would have to use vasopressors, chest compressions, and defibrillation to keep her heart beating and keep her alive.

After this, she remained in the ICU for over a week, and the medical team began itching for ways to get her off of the unit, because she began to be seen as a living corpse taking up a critical care bed and its associated resources—things that could save a different very ill person. Eventually, their only objective was to wean her off of the ventilator and move her out of the ICU, so that her continued care would be someone else’s issue to deal with.

These four patients had different injuries and different circumstances. What was common to them was that they all suffered the bodily harm and indignity of being physically invaded in every sense, robbed of their integrity entirely, and pinched and poked continuously during the last days and weeks of their lives. Since nobody at the time thought they were going to get better, the people doing this to them—myself and other nurses—had an overarching question: Why?

All of us love the opportunity to help save a life. That happens in intensive care, and it is exciting and miraculous. But in the instances I’ve described, and many, many others, nobody involved is under the delusion that a life is being saved. This is where we become cynical, and where many nurses choose not to reflect on the painful purgatories trapping our patients. Rather, they express their opinions succinctly in wry conversations about DNR tattoos, and they master—or bluff—an exquisite segregation of the mental and physical work of caring for these patients from their own emotional energy. They do this in order to be able to continue working. They get over the absurdity of certain circumstances, and they manage not to care.

I’ve not accomplished this. The absurdity weighs me down, and so I want to describe it to you. Medical science can do incredible things. But you would not believe the type of life these life-sustaining treatments often allow.

People who are at the end of their life and are being kept alive artificially have a way of shutting down. Fighting this process is not a peaceful act. Most of the patients I’ve described were on ventilators, with plastic tubes pushed into their mouths and down their tracheas in order to provide respiratory support. The tubes are taped to their faces, and patients who can move at all are usually both tied down by their arms and sedated when on a ventilator, because it is so physically uncomfortable that patients will use their last ounce of strength to pull the tube out of their mouth. These patients were already comatose due to their injuries, but other critically ill patients who were previously awake and responsive become unable to speak while on a ventilator. Once intubated, patients are unable to clear their respiratory secretions—phlegm—and so we stick smaller rubber tubes connected to suction into the breathing tube, down their trachea and towards the entrance to the lungs themselves, in order to vacuum the secretions out of their lungs. You can imagine that this too is uncomfortable.

Patients obviously can’t eat, so they will have had a feeding tube pushed up their nose or through their mouth and their esophagus, down into their stomach. This often takes a few tries, requiring us to pull up the bloody tube, re-lube it, and push it back in at a different angle. If a patient is ill long enough, these instruments will be replaced with a tracheostomy in the neck rather than a tube down the mouth and a feeding tube going directly into the stomach rather than down through the nose. These are for patients who aren’t expected to be able to eat or breathe independently in the long term.

These patients often develop diarrhea, sometimes simply because of the liquid food they receive—cans of smelly, nutritionally balanced tan colored slush—and sometimes because they’ve acquired a very hardy and aggressive bacteria, C. difficile, that is widespread in hospitals and causes profuse, foul stool. If they have diarrhea several times a day and their skin is exposed to it, the skin begins to break down, and so we place a rectal tube in their bottom, held in place beyond the rectum with a small water filled balloon. The diarrhea drains into a clear bag that hangs on the side of the bed. Sometimes when a patient is very sick, as in the case of the man whose family avoided him for over a month after his stroke landed him on my unit, they lose their rectal tone and the tube falls out. This is how I found myself up to my elbows in diarrhea with another nurse, struggling to clean the crevasses of his body and tape an ostomy bag around his bottom, the last hope to contain the flow of stool so that the patient wouldn’t sit in a continuous puddle of it while permission for his death was pending.

Breathing tubes, feeding tubes, and rectal tubes are only part of it. The patients of course have urinary catheters and IVs, often larger IVs that are placed centrally—threaded straight toward the heart to allow us to push drugs in concentrations that would damage smaller veins. Healthier hospitalized patients complain sometimes about their IVs and frequently about their urinary catheters—a rubber tube up your urethra isn’t pleasant. If the patients I’m describing could talk, though, I think the urinary catheter would be the least of their complaints.

In addition to the invasion of tubes, ICU patients live in a world of bright lights and loud alarms, continuous stimulation. People pry open their eyes and shine flashlights into them, then pry open their mouths.

We treat most patients with small shots of heparin in their subcutaneous flesh, in order to prevent blood clots. This makes them bruise easily, and patients who’ve been with us for a while are often peppered with tiny bruises from the shots. Then there are the bigger bruises caused by painful stimulus given by doctors and nurses who are monitoring the arousability of the patient, the depth of their coma. If he doesn’t wake up when you shout, or when you shake him, what about when you pinch and twist his trapezius muscle, or grind your knuckles against his sternum for a while?

It’s been said that dying is easy, and it’s living that’s painful. Not so in the world of intensive care. Patients who have a hope of recovering from their injury, genuinely surviving it, may be fighting to live. For them the torturous days as an ICU patient are required in order to surmount their injury. And there are always cases where nobody knows what the outcome may be, where the right thing to do is maintain physical function and give the body time to heal. Many patients will survive with deficits, will not return to their former selves but will be able to leave the hospital, go to rehab, begin the hard work of adjusting to another kind of life. But time and again we care for patients who are fighting to die, and having a very hard time of it, because in the ICU there are only two ways to die: with permission, too often not granted or granted too late, or in the last-ditch fury of a full code blue.

We are not helping these people by providing intensive care. Instead, we are turning their bodies into grotesque containers, and reducing their lives to a set of numbers monitoring input and output, lab values, and vital signs, which we tweak to keep within normal ranges by adjusting our treatments, during the weeks and days immediately preceding their death. This is the opposite of what should be prioritized when a person is known to be nearing the end of their life without the hope of getting well.

I want this to change. People who choose to do the work of caring for the gravely ill must concentrate on monitoring and responding to changes in their vital signs, administering their medications, examining all of their physical systems, coordinating their various tests and procedures, bathing them and cleaning up their bodily messes, dressing their wounds, keeping them comfortable, and communicating with their families. I don’t think that we should also have to deal with feeling that our work is morally questionable and at times, reprehensible.

Americans have a lot of work to do in developing a more sensible, fairer, and less wasteful healthcare system. That work needs to include taking a hard look at the conditions of patients whose lives may end in intensive care, both at the level of the entire health care system and at the level of the individual—our wishes for ourselves and our family members whose health is failing or has already failed. Our goal is to help these people, and assuming that prolonging their lives for the longest time possible is the only way to do this is a foolish and harmful mistake.

This post first appeared at the Brooklyn Rail.


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104 Comments on "End of the Line in the ICU"

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Kathleen Andersen
Sep 9, 2014

Thank you for this post. My sister gave up her battle last night, I had spent the last week with her and this is exactly what happened until on Monday after two days of thinking this whole set up was wrong and her crying to let her die with dignity and her own free will, I forced my other sister to give the hospital the word to let her free. It was painful to watch her tied up, tubes inside and out, It was exactly as you mentioned, hell on earth, Please anyone who reads this, take it to heart and do yourself and loved ones a favor.
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Apr 28, 2014

ps – I found this thread while researching ICU multi-organ failure stroke patients. And also came across chats of people who spent 9 months battling it before going home.
I’m a DNR by nature, but have seen resuscitate at any cost.

Apr 28, 2014

On the one hand, clearly there are times when someone is dying and all the “care” does is slow it down to miserable – terminal cancer, brain stem injury, etc.

Stroke, different story. Some come out of it, some don’t. No brain waves, clear choice. The start is with the expectation that the tube assisted living is short term. The tougher decision, when to stop. Days? Weeks? Two months? Awake and coherent on some days, then gone for weeks at a time. No way to live. No way to die.

What would help us? A timeline or descent rate. Recovery by X else continued treatment is pointless. Descent rate is X and our (doctors plus decision stakeholders) are delaying the patient’s final relief. We (doctors and family/decision stakeholders) need some bearings, because doctors and family are awash in decisions and emotion tides of the events du jour.

Mar 29, 2014

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Mar 5, 2014

debbie its a difficult situation for your husband, of course your father in law wants to live and i can understand that he is a fighter. for my father we wanted all these feeding tubes, trachs but the doctors decided not to do that. his lungs were bad but other organs worked well but we had to let him go because the icu head in a toronto hospital didn’t want to offer him trach. my brother thinks my dad is in peace now, no sufferings like the icu doctor thought but i still feel guilty for not convincing the doctors as i was the main care giver of my dad. it will always haunt me though i am also trying to tell myself that doctors know the best.

Mar 4, 2014

I have sent a private letter to my children to tell them if I cannot have a semblance of the life I had before a catastrophic illness don’t let me live longer. I am 80 and healthy but who knows!

Feeding tubes, trachs, nursing homes, no quality of life. Who needs it? I can face death, although not willingly but resignedly and do not want to put my children through tortured moments wondering what to do.

Why anyone would want to live, given grave incapacitation and high cost is beyond me. Why put our children through this?

Jan 27, 2014

My father in law had a massive stroke while in the hospital for AFib. It was on the right side of his brain, about 60% dead. He has been on a vent for almost 2 weeks and feeding through nose. He had a living will that stated if he was in a terminal state he didn’t want life sustaining treatment, etc. He has no movement on his left side, GI bleed that hasn’t been addressed, a collapsed lung that reinflated, but then blood surrounding lungs that they had to drain with tube. He can open his eyes and shake his head yes / no. They are now at a point that they want to take the tube out and do a tracheostomy and at the same time put a peg tube in to feed him. They want to move him to a nursing home in the near future. When I look at him I do not see recovery, but they say he may speak although may be slurred. Will not walk again, and by the sound of it; even though they say the trach and peg tube are “reversible” I cannot envision him being able to eat on his own. They removed the breathing tube once and had to put it back in b/c he struggled to breathe. His right side is weak at best, very little movement and slight tremors in his hand so I don’t think he’ll be able to feed himself even if he could eat. He has problems with lungs. He cannot have anticoagulants b/c of bleeding that he had more than 3 weeks ago that they haven’t figured out. Anyway, my question is; he had advance directives and we as a family were prepared to give him comfort care. HOWEVER, on that very day the doctor suggested that we go ask my father-in-law if he wanted to live or die. This caught us off guard and I feel was a bit manipulative, but my husband did as he suggested. “Dad you had a severe stroke, you will need a lot of care and have to live in a nursing home” “Are you okay with that?” His dad shook his head yes. I’m so torn as to what advise to give my husband and his brothers; they are split. My husband says how can he discontinue care if his dad said (shook his head) yes, but his brothers wonder does he really understand the consequences and lack of quality of life that he’ll have. Any suggestions?? Please!

Jan 9, 2014

Excellent description of the torment that many are forced to “live” through! As an ER nurse I see many of the same patients. My coworkers and I always shake our heads & joke about the same tattoos you mentioned, “DNR across the chest or forehead”. It is heartbreaking to resuscitate these patients & when we do “save” these folks & transport them to the ICU, we feel guilty that we have done our “job”, & sad knowing that there will be NO quality left for these people! Thank you for sharing your experience, hopefully it will help some families avoid placing their loved ones in “high tech torture chambers”.