Examined Lives: Withdrawing care in the ICU

by Kristen McConnell

We all want to die quickly and easily, and old. But now that everyone has a cell phone in his pocket and transport to a hospital is rapid, the sudden heart attack, massive stroke, hard fall, or even pneumonia that would have swiftly ended a life a couple of generations ago is less likely to kill you and more likely to get you admitted to a hospital and intubated. At that point, decisions must be made.

Intensive care is the place where we hold back death after an acute illness or injury, largely by breathing for patients with machines and by stabilizing their vital signs with a host of powerful drugs. Some patients do well and recover, others can’t, and sometimes a patient’s family realizes that his health won’t meaningfully improve, or that he would not want to live in his condition, and decides to withdraw care.

The first time I saw this was haunting. I was a brand new nurse, and I knew the patient because I’d cared for her previously. She’d had a devastating stroke, and almost no visitors in over a month. Her body had deteriorated in many ways, and we were juggling treatments, fighting a losing battle. The family made the decision to withdraw care from afar. Her eyes were always open, and it was possible that she was conscious but unable to respond with any type of movement. There was no way to tell.

She’d been taken off the ventilator and given morphine to ease her discomfort from air hunger. At the end of my shift I walked by her room and saw it darkened, the monitor off, the whites of her eyes the only pops of light. I was shocked to see her left alone in her last hours. I snuck in and squeezed her hand, talked to her a little, told her she would be okay soon.

The second time I saw care withdrawn was almost joyful. The patient was elderly and his wife was confident that he didn’t want to live on life support. Now off of the vent and breathing insufficiently but independently, his nurse said he seemed so much better. He looked comfortable, his arms free from the restraints he’d been struggling against, and his blood pressure, which had been high enough to require pushes of IV labetelol, was now normal. “He was fighting it so much,” she said. His wife stood at the foot of the bed while I helped my friend bathe him. “Give his bottom another wipe,” she said. “This is probably the last time.”

Last week my own patient had care withdrawn. He was in his nineties and had broken his spine in a fall, going overnight from independent to intubated and on vasopressors, to keep him breathing and to maintain viable blood pressure.  His aging children were scared to enter his room. They peered through the glass door, asking me, “What’s his prognosis? What’s going on? He wouldn’t even know if we went in there now, right?”

I explained what they were seeing and told them that now he was stable, but without the treatment and the ventilator, he wouldn’t be. And I told them that for the last few hours he’d been responding to me by sticking out his tongue when I asked, so I thought he would know that they were there. Did they want me to go in with them? No. They went to the waiting room.

Talking with the surgeon, our ICU fellow, and me, the family easily understood that a major operation, at his age and with his underlying health conditions, wasn’t a good option. Without surgery, we could continue to care for him and hope that he would become stable enough to leave. Given his injury, leaving the ICU would mean moving to a nursing home and having a feeding tube, perhaps being dependent on a ventilator, and certainly being unable to walk.  The likelihood of complications in the ICU was high—he was susceptible to infections, he already had heart disease, and his blood pressure, dangerously low due to his injury and now maintained medically with an aggressive, titratable IV drip, might not stabilize. There was a real possibility that he would never become healthy enough to leave.

Otherwise, we could cease intensive management and let the natural effects of his injury take their course, focusing on his comfort.

They asked about thinking it over for a day or so. This is always an option, but I hoped they wouldn’t take it. I was the one tightening the man’s restraints to keep his hands away from the tube and talking close to his ear, telling him we would keep him as safe and comfortable as we could. But after asking us to step out and talking briefly, they’d decided. Under these circumstances, their father would prefer to have medical care withdrawn.

The doctor explained that we didn’t know if the patient would breathe on his without the ventilator, but that we would give him morphine and make sure he was comfortable. I had a Catholic priest come to perform last rites, and stood with the family as they prayed and wept.

The doctor said now that he knew what their father wanted, it was his job to carry it out, trying to absolve them of the sense of responsibility. I don’t think that was what upset them though—and I told them it was okay to be sad that he was dying. “It’s better not to be sick for a long time,” I said. “I don’t disagree,” said the patient’s son. “I just can’t believe it.” His daughter noted the musical tone of our ventilator alarms, and said that he would have told them about it, that he loved music and dancing.

They wanted to leave before we took their father off the ventilator and stopped the medications. I reminded them that he had been responsive, and since he’d had his last rites, probably knew what was going on. But they chose not to say goodbye, telling him they were getting lunch and would see him later.

I wanted to get it right. I wanted to catch up on my other patient so I wouldn’t have to leave this one alone while he was dying. The doctor put in orders to withdraw care and discontinue the medications, but I wanted to wait until the tube was actually out before stopping those, because I didn’t want him to die while he still had a plastic tube taped to his face and snaking down his throat, pushing air into his lungs.

When everybody was ready, the respiratory therapist, doctor and I gathered in the room. I was hushing people when they said something too bluntly or matter-of-factly, reminding them that the patient, though sedated and not alert, had been able to follow commands. I held his hand and said,  “Don’t worry, it’s okay, we’re going to take this tube out because we want you to be comfortable.” That was the best thing I can think of to say—it was true.

With the tube out he didn’t struggle at all, and with the meds off, his blood pressure was dropping. He didn’t need the morphine. He was comfortable. He took a few breaths. While the doctor and I stood by him, his daughter called. I told her that we’d just taken out the tube and he was passing very quickly, that it wasn’t going to take hours or days. He was going now, as we spoke.

In an ICU, the monitor displaying vital signs in a patient’s room is connected to a central system. Alarms for asystole—no heart beat—or other problematic values flash across every monitor on the unit to alert us. When this happens, nurses will stop by the room to see what’s up. Under normal ICU circumstances, the bright lights are on, many people are moving quickly in the room, and we gather, watching to learn, to step in if another person is needed to push a drug, do CPR, or keep track of the interventions, and to be available as a runner for supplies. When care is withdrawn, the monitor in the patient’s room will be off, or silenced, but alarming values are still displayed throughout the unit. But in the room, there’s no drama—just one patient, sometimes the family, one nurse, a doctor.

An intensive care unit is not the ideal place to try to let a life end peacefully, but there’s not always the opportunity to arrange something else. When a decision is made to withdraw care, stop interventions, and let someone die, we do our best. This is what it looks like.

Kristen McConnell

 

Kristen McConnell, R.N., works in a specialized intensive care unit in a large academic hospital. Read more of her work here.  

For more about the Great Challenge of coming to grips with end-of-life care, click here

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1 Comment

  1.  
    Linda Ann Chartier
    12 months ago

    I agree, with all you Share here, and Identify fully,from a loved ones perspective,and I AM SO SCARED for my END! I always say to my husband”I am getting a TATT on my LIP DNR! and on my chest NO HELPING ME! DNR! really Please excuse my awful writing, I speak much better…. I HAVE SO MUCH to share,and when I write It is so segmented.
    Kristen McConnell ,doONLY WITH THE futile care and the awful end of life …awfulness , but my dad needed me, it is Impossible to , advocate for a Loved one,Specially when a Error has occurred.
    Over five months,my father suffered,and was Awake,and I know they tied hime down daily and w/o a doctors ORDER.
    I cannot express what is endured,when You Know You are suppose to be your Fathers Advocate,and are Uncontested ,by the rest of your siblings,YET the Hospital decides You are not who will know anything,and then they LIE and LIMMIT MY ability to freely visit my dad, I KNOW THE LAW stated I AM My fathers , Next of Kin,when the LAw states YOU ” are who shall be their at the VERY least NOK” because they are a single adult and declair THAT THEY HAVE no, Power of Attorney , nor a advanced directive…
    I have all his medical records that all 3 facilities ALLOWED to let me have,(as appointed administrex ) I have READ much of his documents,including his admissions, I see what my father signed, when he was admitted, and it in his sane hand states no POA! period. and he states he has 5 children. I am second oldest and I WAS there almost daily for hours,Imagine seeing your father laying there after a CABG” and then needing a second emergency,surgery,cause of bleeding,but NOT ONE FACILITY nor their pseudo POA, will speak to me, let me know anything ,my AUNT DID THIS FOR SPITE” the HOSPITAL knew what they were doing when they picked,Aunt Helen’ his sister…. a OLD WOMAN to be the POA…. she was Intimidated by the ” Surgeon ,and only replied “YES “to any required consent verbal or written. ANY request for anything to be done” .\
    AFTER THE HELL, is Only when I found out, about the hemorrhaging, the SEARCH FOR A BAD needle count post the initial surgery ‘ AUNT HELEN did not know of this at all’
    Proof no questions asked.
    I believe I sort of know what Was done, and about me being stone walled and deflected from ADVOCATING FOR MY FATHERS COMFORT The NJ Hospital my father had open heart surgery at ABSOLUTELY did not follow the LAW.
    I walked on egg shells, THEY did not want me, there ,to see, document , what they did or did not do, the smells, the filth, the way pain medications were with held post open heart was a nightmare. AND I was the only witness. IF THE CARE HE was now receiving, was FUTILE………. I only wanted Comfort Care’
    How could I a simple daughter get ANyone to hear me and believe My Intentions, how could I help my father? I was who Had every right to do so as well!
    In my wildest dreams I did not want any problems , for dad or me nor the Hospital
    Absolutely, yes I did grow suspicious when it is clear’,that the truth was being held back for a reason,what good did holding the info away form a loved one DO?
    MY FATHER DID NOT WISH to be on a ventilator, nor did he realize he had 2 surgeries ! I did not need to be the absolute decision maker, but dagnabbit some one needed to do something…….. and aunt helen did zero!
    …. I HAD ONLY HIS INTEGRITY and COMFORT. on my agenda …. FIRST IN MY ACTIONS AND PRAYERS AND I was not allowed to , have any meeting with ethics committee
    I shared this with the CPE-Students” from the Pastoral care office, After they give ESS/ THESE Students do VERBATIM reports’ (as part of their curriculum) and give reports to the head chaplain ,and then what I said was shared with ADMINISTRATION/ and staff all get a heads up on any challenges / from any visitor or patient then they get rid of the problem if it is a visitor! or they regulate their visits via /chaperones and surveillance! SO I believe they got the wrong IDEA! I WAS IN DURESS!
    I believe they did not believe this.
    THEY then allowed his sister to be his ,POA? it was HELL she as well as the entire staff stone walled me,and the rest of my siblings and the family.
    WHAT CAN I DO to help change this Unevenly Yolked POWER? IT IS ALL so awful, the fear a doctor has from getting brownie
    I nor anyone, not anyone, helped me, MY DAD BEGGED ME to help him, ,I write as if this just happened? NO, it was 2006, May 29th till Oct 31. 3 days after My father died, They called me’ after stone walling me,THEY ASK” when will I collect the BODY” now I could have HIM!
    I NEVER SAID GOOD BYE,and I cannot make a CHANGE I am stuck, I must share the facts,and help make a change. anyway I can.Please let me do something what can be done. . I WILL CONTINUE TO FEAR MY OWN END” I am awful writer, I am an Artist, Painter,Construct,sculpt paper cut,photos and very little poems.
    . I wish I could write more effectively.
    BUT PLEASE” something has gotta change. Tieing my father down, he wanted to not die or Live like that. I have PTSD,and suffer. I KNOW TO HOLD HIM against his wishes That was not a orientation to self’ HE had no POA,and created a phony one after I continued to request proof that I was never shown,but found the fake one,after His Lonely and suffering death.I ask who was with him,then? a security guard,?and a orderly? in a dark hole somewhere in the basement? ITS LIKE THEY TOOK MY FATHER SOME PLACE HE IS NOT Actually dead,I am searching for him, THIS IS HELL ON EARTH for the PATIENT AND FOR THE DAUGHTER……
    IT must change it has to change… Who can help me Understand what I need to do to accomplish some sort of control of my own self’ of my ends.I talk with my husband all the time when he says’ don’t worry Ill be at your side’ if he is alive,and I SAY,” No you are helpless’ against the ABUSE OF POWER” they self govern and ONCE THEY HAVE ME” you cant do anything they will lie,and cheat…. then they will do things that you know if you do anything to disturb the peace’ or try to get answers or control’ THEY WILL LIE and get you arrested or even worst’ keep you from me OH DEAR GOD”
    I KNOW WHAT THEY DID TO DAD,and TO GRAND MA AND TO STEVE, DEAR JESUS HELP,us dear GOD HELP US! I SWEAR I AM PETRIFIED.and I am 52, and Monday I am slated for a Upper endo’ …..after a decade of symptoms (throat-GUT pain and Scared Lungs and burning …ohhhh somebody do something PLEASE …dear GOD” I cant even do this TEST! Dr Kevorkian is gone..seriously,is this what people need to prepare for so as not to be subjected to their ABUSE AND POWER HOLD, I cant go that route’ I do not want to do anything Improper…. WILL I actually have a choice?
    THERE IS NO ORIENTATION TO SELF” No Informed consent…and NO PATIENTS RIGHTS
    ok my smart Kristen McConnell
    your last statement is not very encouraging. there must be a better Explanation and Answer! I can not accept this…. it is not OK!
    peace,
    Linda Ann Chartier Heisler
    4/23/2013
    Matawan,NJ