End of the Line in the ICU

End of the Line in the ICU

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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"


Guest
MD as HELL
Nov 16, 2012

Bless you, nurse.

People should not be punished for getting old. Yet reducing care based on policy will never feel good. It used to be the family doctor told the family that we would keep grandma comfotable and she would not suffer, and she peacefully died.

The consumer movement in healthcare about 25 years ago removed that power from the physician and gave it to the family. They had no way of dealing with such masive responsibility and possible guilt except to insist that “everything” be done. Pity.

Now in the hospital a Hospitalist with no emotional atachment to either the patient or the family is deciding what to do, and it does not feel good.

Death and dying are real, but putting government in the equation is a bad thing.

One family at a time at the right time is my approach.

People should not be inflicted with punishment at the end of their lives.

Guest
Craig "Quack" Vickstrom, M.D.
Nov 16, 2012

Amen

Guest
MO
Aug 5, 2013

The one thing that strikes me about your reply is the “consumer” aspect of healthcare. Some people take the time to educate themselves their health and are better advocates for themselves than even the most experienced doctor. However, that’s not usually the case. Many times, people who only use the ER has a primary care alternative and only consult with doctors in the case of dire need are the ones who are left making the decisions for care as a result of the consumer movement. http://navixmarketplace.com/blog/emergency-room-overuse-a-cause-of-rising-medical-costs/

Even though I do agree that the consumer-centered healthcare model isn’t the best choice, what is the alternative? The power of choice shouldn’t be in the hands of strictly the family or strictly hospital staff. Where is the line drawn that denotes balance in a patient’s medical care plan?

Guest
Mar 4, 2014

well..don’t worry..there is always the death panels that obama plans…organ harvesting if need be and can be serviced..

Guest
steve
Nov 16, 2012

Remember that the clause in the ACA that would have paid docs to talk about end of life decisions ahead of time was taken out in response to the claims of death panels. Every time I have to take one of these patients to the OR for torture I remember that. Most people just never think or talk about end of life decisions. We need to incentivize people to do so. (This would be done by primary care docs who would know pts the best and have the fewest economic conflicts.)

Steve

Guest
Maureen Mower
Nov 28, 2012

This is where (and probably the only place) having cancer can be useful. It forces the patient, their family and their doctors to have discussions about end of life options long before those options are needed.

When my aunt was diagnosed with pancreatic cancer, she chose not to pursue treatment, because she wanted her last few months on this plane to be comfortable, surrounded by family and not by machines. She made those wishes clear to everyone from her husband to her kids to the extended family, and most of all – in writing to her doctors. Because of this, she spent those months in her own home, surrounded by her loved ones. She had hospice care at home, with nurses checking on her daily to change her IV’s, monitor the effectiveness of her pain meds, and ensure she remained comfortable. She had a DNR as well, so, on that last day, when the machine that had been brought in to monitor her vital signs after she lapsed into a coma earlier that week started to beep incessantly (indicating her heart rate was dropping to dangerous levels), the nurse simply turned down the volume and backed away so that the family could be there to hold her hand and say their goodbye’s as she drifted off to her final rest.

My husband has cancer now. His cancer is more survivable, so he isn’t in hospice yet. However, he has also made his wishes clear, and we have agreed on the plan if the disease progresses, or if some other complication comes along (like a stroke) that makes it unlikely he will ever wake up or have any meaningful life outside of a hospital or nursing home again. He has been in ICU once, for two days – due to a mistake by an ER doctor that caused a medical crisis – but there was never any doubt that he would recover from that crisis, so there was no reason to withhold care. Should that reason present itself in the future though, both I and his doctors know what he wants. If there is any “blessing” to cancer, it is the TIME it gives you to consider these things and make those decisions before they are needed.

Guest
Maureen Mower
Nov 28, 2012

PS – there are some things I disagree with, however, when it comes to end of life care. I do not agree with the idea of withholding nourishment. DNR’s are fine. Turning off life support, good.

But forcing an incapacitated patient to go through the pain and suffering of literally starving to death is, to me, cruel and unnecessary.

We need to change the laws in this country to allow doctors to administer some kind of medication – either a high enough dose of morphine or something else – so that a person whose only other option for ending their suffering is to make them suffer more by forcing them to starve to death can instead have a peaceful and appropriate end.

Guest
KimHogarth
Nov 29, 2012

I completely agree with you Maureen.

My grandparents created a living will that stated that no extraordinary efforts be made to save their lives if something catastrophic happened to them. My grandmother then suffered a stroke, so in accordance to her wishes, she was sent to hospice. Since she couldn’t swallow, she was denied nourishment and essentially was starved to death over the course of two weeks. It was awful. I couldn’t understand why this was the only “legal” way to let her die. Even now, over six years late, I break down in tears thinking about those last two weeks. It was cruel horrible way to leave this earth and my sweet loving grandmother deserved so much more.

Two years ago, my beloved old dog needed to be put down. I held him while the vet administered the series of shots needed. He fell asleep snoring deeply and then just stopped breathing. All I could think was ” I wish I could have given my grandmother a death this merciful.”

Guest
Susan RN
Nov 29, 2012

Most dying patients, especially those dying of cancer, find that their appetites decrease naturally as death approaches. It may be hard for the person watching to deal with the situation, but it’s been shown that cancer patients who are tube-fed are less comfortable and die sooner that those who are allowed to follow the dictates of their bodies and stop eating when their bodies can’t use or digest food any more. This is just part of allowing process of dying to proceed naturally, not “forcing them to starve to death.”

I saw this when my dad died of bladder cancer a year ago: he was extremely nauseous and took less and less food and liquids until he died, but the cancer was what killed him, not the decrease in his intake.

Guest
Nov 29, 2012

The same was true with my dad and father-in-law. I have found this with many patients.

Guest
Mar 4, 2014

when you get to a chronic sick state, food is not of interest to majority. I had a problem with this one too, but as we die inside, food is not even tasty, desired, or wanted, our needs change and the focus is not the usual, but the person turns inside, food is time with family, talking what needs to be said..just listen to the patient, ask if they want food or fluids, no is the answer, no it is. listen to them, they will tell you..pain meds, you bet. Don’t be surprised if they don’t want it. I have seen end stage cancer patients turn away pain meds, they don’t want to be numb, dumbed down during their last few days. Amazing. I ask if they do hurt, they say no, i don’t ask again, i tell them its here for you, you tell me when..

Guest
Nov 16, 2012

As a patient, I am thankful we still have some rights. I have been talked to by doctors about filling out end of life papers that say DNR. I constantly refuse and say every effort should be made to keep me alive. After consistent attempts, I finally have told my family and the doctors that if hospital euthanasia is suspected – the hospital is to be sued. It is getting to the point I feel the hospital is trying to bully me into signing the papers which I will continue to refuse to sign. I finally was forced to have an attorney draw up cease and desist papers, papers stating that every effort would be made to help me survive, and present them to the doctors and hospital.

I will continue to speak out against physician-assisted suicide, hospital initiated euthanasia, and medical euthanasia practiced by unethical medical personnel. When my time comes, I hope I can pass peacefully in my sleep. But I am prepared to wage a battle with the hospital that values its bottom line more than the patient. I have even heard the term healthcare rationing as a way of treating patients near the end of life to preserve hospital profits and take advantage of incentives offered as part of the Affordable Care Act.

Guest
Nov 16, 2012

Adjust.Tinfoil.Hat… Check.Precious.Bodily.Fluids… Buy.Obama.Mind.Control.Phase.Cancellation.Neutralizer…

Guest
tcoyote
Nov 17, 2012

DId you read the freaking post? Separate out the economic issues and ask yourself “is what this woman is describing ‘passing peacefully in your sleep'”. She had the guts to call it torture and that’s what it is. If this is what you want, you should have the courage to pay for it yourself. The default setting is to do exactly what you describe, “doing everything to keep you alive”. Please define “alive” for us. . .

Guest
Nov 26, 2012

I think that we as healthcare professionals need to fully and carefully describe each procedure that could be done and what that means in the long and short term for the patient. How often do we hear,” we are going to put in a tube that will help them breathe.” That is the entire explaination often. That is NOT informed consent.. We obtain informed consents for other invasive procedures. I believe there should be forms very clearly and descriptively describing the procedure and the care that will follow, like suctioning due to increased, thick secretions and this procedure should be exlained as sucking out what is in the lungs and that it makes the patient feel SOB, etc, etc. Forget death panels, such bull crap should have been stopped day 1. We do need to be more honest about the care as is described by KRISTEN MCCONNELL. But Kristen let me say this as a nurse of 31 years, if you stop caring, you are in the wrong profession. I have done ICU and ER, supervision and office nursing at the end and never once have I or my nurse friends EVER stopped caring. In fact it just gets stronger and you learn how to fight for the patient.

Guest
Craig "Quack" Vickstrom, M.D.
Nov 17, 2012

Mr. Fenton, the hospitals and physicians who DON’T want you to be DNR are the ones who want money. The more stuff you get done to yourself, the more money they get.

Guest
R. McCarthy
Nov 27, 2012

Wow. What a heartless response, neatly avoiding responsibility for anything but inflicting massive discomfort on a dying person.

Yes, it can be a hard decision to make. I just hope my legally responsible guardian, be it my wife or my son, can decide to pull the plug when it’s needed.

Guest
Maureen Mower
Nov 28, 2012

Like you, for myself, I want to be sure every effort is made to keep me alive, no matter how unpleasant those efforts may be (the discomfort will be – I think – a blessed reminder that I am still alive). Of course, I’m only 51. I may feel differently when I’m in my 80’s and know that the likelihood of surviving even a broken hip (let alone anything more serious) will be slim.

However, I completely disagree with your assumption that your doctors, the hospital or the authors of the Affordable Care Act have ANYTHING to do with asking you to make those decisions. The fact that you apparently refused to READ those papers is the real culprit. For if you HAD read them, you would know that the form gives you the OPTION of choosing whether you want every effort made to keep you alive or not. The only reason they kept asking you was because you never gave them an answer!

Maybe next time you can save yourself the legal fees and just read the paperwork first.

Guest
LP
Nov 28, 2012

I don’t know how to break this to you, Bob Fenton: but be assured you ARE going to die. At some point. No matter what papers you draw up.

Guest
Lazarus
Nov 29, 2012

Mr. Fenton, go crawl back under whatever backcountry church you crawled out of…

Guest
Sara
Nov 29, 2012

Bob but you realize that by telling the hospital to keep you alive no matter what – you will not be allowed to die peacefully. You will most likely die like the elderly women cited in this piece. With people pounding on your chest, cracking your ribs, trying to restart your heart. I actually FEEL sorry for you because I think it has less to do with the hospital and more about your fear of death. I sincerely hope that you can come to terms with this.

Good luck to you.

Guest
AshRN
Jan 5, 2013

Bob Fenton….you made me laugh……at you. You will never meet people who are more willing to fight for you, clean up your bodily functions, and listen to your constant questions and questioning more than your nurses. I’ve been an ICU nurse for 6 years and it’s offensive to me for you to say “as a patient, I am thankful we still have some rights.” You as the patient or your advocate make EVERY decision about what happens during your hospital stay. What the author of this article is saying is we should give you MORE information about what the “lifesaving” measures we take will actually do to your body. We nurses have families too, and we have been patients ourselves, of course we all have rights!! So contrary to your belief, offering a DNR is not the doctor being a bully, he’s doing his job by presenting you with your rights, that you are so thankful you still have.

And P.S. Never have I ever heard of rationed healthcare items to an end of life patient……give the dying guy the sheets with the holes and the stained pillow case……give me a break!!

Guest
Jan 8, 2013

Bob,
Would you really want to be hooked to a ventilator and feeding tube, unable to initiate your most basic bodily functions? Doing everything to make sure you “survive” implies that you will be back to or near your former self after the ordeal. What about when you have no hope of returning close to your baseline functioning? That is the purpose of the DNR. To allow those people some dignity and power over how their final days, hours, minutes will progress.
They are called comfort cares for a reason. Keeping people comfortable is completely different from euthanasia. Which last I heard, there’s maybe less than a handful of states that actually support physician assisted suicide. And those that do have strict criteria usually limited to terminal diagnoses where the pt is completely coherent and capable of making the choice on there own.
Doctors don’t just get to decide” hey, I’m going to euthanize my critically ill patients today”
Keeping someone alive when nature is saying to let go is often times just cruel.
You have every right to refuse a DNR, but really you should educate yourself about what that would mean in the face of an irrecoverable illness or injury.

Guest
Michael
Jul 30, 2013

Bob:
By what right to you demand to soak up scarce resources? What moral authority gives you the ability to demand a disproprtionate share? Why are you more important than the 500 other patients who scarce health care dollars would fix?

Guest
dave
Nov 16, 2012

You are delusional. If you truly want to die in peace, when its time. You need advanced directives, that limit physicians from putting you through ineffective treatments. Cpr. Done correctly, breaks ribs. Feeding tubes can cause food to be spit up,aspirated. Healthcare facilities are required to review code status with authorized decision makers, on every change in care setting and significant change in condition. Go ahead and have your family keep saying, fullcode….youll end up suffering..but thats your right……

Guest
Barry Carol
Nov 16, 2012

Wow. This post confirms my long held view that in the absence of a living will or advanced directive, the default protocol should allow doctors to apply common sense depending on circumstances without having to worry about being sued as opposed to the current default requiring them to do everything to keep the patient alive or, more accurately, to prolong his or her death. The current system is a disgrace.

In shouldn’t be that hard, in my opinion, for medical specialty societies to develop a consensus around just what “apply common sense” means in a variety of circumstances that account for the vast majority of likely end of life situations.

Guest
Nov 16, 2012

Yes, I am very thankful it is my right. I guess I have seen the better side of people surviving. A relative that had what medicine thought was terminal cancer lived for ten more years because her family would not give up. And those ten years were not confined to a bed or wheel chair, but traveling and talking to other cancer patients about her treatment. She was actually in remission and her doctors would not acknowledge this until five years later.

I have seen CPR break ribs, but people still lived and had a quality life. I have been around people with feeding tubes and no it isn’t for the faint of heart, but the people lived.

So your horror stories have no effect on me and just prove how far people will go to justify killing (euthanasia) other people because they have lived too long. I sincerely hope you live long enough to enjoy life and a retirement.

Guest
Nov 16, 2012

Anecdotes prove nothing.

Guest
yoohoocthulhu
Nov 28, 2012

I have to say that the cases you mention are exceptional. If you spend any time around an ICU ward and keep track of the patients, you’ll find that the vast majority have a very grim prognosis.

To counterpoint your stories, I recently had a 20-something sister pass away due to cancer treatment complications; she spent her last 3 months in the ICU. She went through every kind of heroic care imaginable (mechanical ventilation, chest tubes, high dose antibiotics, high dose steroids, high dose antivirals, high dose antifungals, paralyzing drugs, full sedation, etc). When it ultimately became clear that too many problems were accruing for her to recover from, and she was suffering and unresponsive…we had absolutely no qualms about withdrawing care and calling in the family so everyone could be there in her final moments.

If we’d known at the beginning what we knew at the end, we would’ve withdrawn care after the first few weeks. The lasting trauma to our family from visiting constantly (multiple times a week) and the general rollercoaster of ICU treatment was also not insignificant, and several of us are being treated for lasting PTSD, sleep, and anxiety problems.

Guest
yoohoocthulhu
Nov 28, 2012

Not leaving an advance directive doesn’t just harm you, it also harms your family who will have to endlessly agonize about what the “right” decision to make is when they see you constantly suffering yet don’t want to lose you.

It’s also worth noting that, in general, long ICU stays are associated with significant lasting psychological trauma for the family, even if the patient ultimately recovers.

Guest
Maureen Mower
Nov 28, 2012

Bob – yes, miracles happen every day in medicine. No one is disputing that.

The problem is that by refusing to create an Advanced Directive, you have refused to provide your doctors and the hospital with the very instructions YOU want them to follow. Advanced Directives are not just for those who want to have a DNR or other instructions to end their lives. They are ALSO for those who want every possible medical intervention.

The entire idea of an Advanced Directive is so that YOU can decide the kind and level of treatments YOU want, now, while you are lucid and healthy – so that no one has to guess at your wishes when you are in a coma or on life support.

So you can still have exactly what you want with an Advanced Directive. The only reason the doctors and hospital kept asking the question is because you refused to answer it (ie: fill out the form). Had you read the forms, you would have known that you had the option, right there in writing, to request all possible medical interventions (or none, depending on your wishes), and that everyone from your family to the doctors and hospital staff are required by law to abide by that decision.

Basically, an Advanced Directive gives you exactly what you want… it puts the decision-making power in YOUR hands (whether that decision is to request every possible treatment and life-saving measure, or to refuse such things as CPR or intubation – and you can even pick and choose which treatments you do or don’t want – like saying yes to CPR but no to intubation, or saying yes to being removed from life support, but refusing to have nutritional support removed, etc.), and ensures that no one can depart from those instructions unless YOU change them.

All you had to do was read the packet to find that out.

Guest
Di
Jul 21, 2013

Hospitals do not even look at advanced directives. They typically do what the family wants- not what the patient’s wishes are. It’s such BS. Patients DO suffer and hospitals do not initiate ethics committees’s input. Everyone will suffer at end of life while in ICU. The original poster is 100% correct in her dissertation.

Guest
Jared
Jan 14, 2013

Unfortunately Bob, they’re not just “horror” stories, they’re real situations that happen every day, not just once in a blue moon. To insinuate that we in the medical profession just want to kill people because they’ve lived for too long simply proves that apparently logic & reason have no effect on you either. The last thing on my mind when going into work is the thought of killing anyone. I hope you understand how truly ignorant & idiotic your above statement is. Stating that a group of doctors would, instead of rejoicing in the fact that this person was cancer free, instead refuse to tell her that fact? On what planet would a doctor not want to tell their patient that their cancer is in remission? I mean seriously, is this how you think? Have you grown up past the age of 10? That is not how we act in this profession, you fool. It is our duty to provide our patients w/ every alternative, every option, every reality, both good & bad. It is not a perfect science, a lot of times, we get things wrong, and low & behold, someone who is told they have terminal cancer lives for 10 more years. And you’re so stupid you then say that somehow we were trying to kill her? You should feel nothing but blessed that that person was on this earth another 10 yrs, & I’m sure we also had something to do with that as well. Sorry Bob, but I doubt she lived all of those 10 yrs simple due to her family’s dedication alone. I am certain she also had the help of many a medical professional. She certainly didn’t survive with only the help of an ignoramus like you. We are truly the one place on this earth that doesn’t judge people or discriminate against any race/color/gender/orientation–we treat whoever comes in the door, no questions asked, so for you to make such claims is based, no doubt, on pure ignorance & empty rhetoric, most likely uttered by that bimbo from Alaska. Get out of your own way, don’t speak on things you obviously know NOTHING about. You are an uninformed, ignorant fool, & have no business posting on such a serious issue. Go crawl back into your cave & let the evolved humans make these decisions. You can decide on the simple stuff, like paper or plastic, you unenlightened halfwit.

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Dr. Mike
Nov 16, 2012

“We are not helping these people by providing intensive care.”

No, often you are not, but at least you’re avoiding a malpractice claim. For every tort claim that might arise from inserting a tube in some body orifice, there are a hundred for not inserting that tube. Yes, yes, an exaggeration, I know, but that feeling – the feeling that what you don’t do can end your career – is pervasive in the industry. It is a feeling that is shared by people just like you – your former neighborhood kids and classmates, your relatives, your facebook friends, the people you see on the bus, etc because health care workers are all around you. You would feel the same in their shoes because you would be in the same system. So go on, pat yourself on the back about how enlightened you are about the futility of end of life care, but until you acknowledge the strangle hold that litigation has on the industry, and call for true tort reform, you might as well get used to the idea that there is an ICU out there waiting to abuse you.

Guest
Maureen Mower
Nov 28, 2012

I agree that there are many frivolous and unnecessary lawsuits out there, but I don’t feel comfortable with “tort reform” – particularly because no one ever spells out exactly what that means to the patient whose life is ended or irrevocably harmed by medical mistakes.

An uncle of mine went in the hospital to have tumors removed from his colon. He was elderly, but in excellent health prior to the surgery, and the operation itself seemed to go off without a hitch. Several days later, when solid food was re-introduced, he began having severe pain and shortly thereafter, began vomiting. A CT determined the cause of his problems… during the closing of the colon, someone had sewn it shut, transversely! In other words, it was like sewing a sock closed… nothing could get through. Needless to say, this required a second operation to correct. He survived the operation, but never woke up, and died a few days later.

To me, his family is completely justified in pursuing a lawsuit against both the hospital itself and – individually – every member of the OR staff responsible either for performing the closing or inspecting to ensure it was done correctly.

Similarly, a good friend of mine went in for a minor gynecological procedure some 20 years ago. During the procedure, the doctor nicked her colon with the scalpel, but failed to notice the slow bleeding,. She was sent home with a low-grade fever, which also was not seen as a red flag to anyone. After several days of calling the doctor with reports of increasing bleeding and temps, only to be told that such things were still “within the normal range”, a friend who came over to walk her dog found her unconscious. By this time, she not only had a major bleed going on, but more seriously, she was completely septic, as fecal material had been leaking into her bloodstream and throughout her body for several days. She ended up with a colostomy, as well as having a considerable length of bowel removed, and spending over a month in ICU. That wasn’t the end for her, either. She was in severe pain, caused by several complicating issues like scar tissue, bowel abscesses and other things. All in all, she’s had over 15 additional surgeries during the last 20 years to try JUST to control her pain so that she can maintain enough function to do her job and have some quality of life. But compared to her life before, which included things like playing tennis, skiing, traveling around the world, etc – her life has never been the same. She did sue, of course, which I feel was absolutely justified – but the amount she ended up getting out of it after the lawyers and medical bills were paid, wasn’t even enough to pay for one vacation to Europe, even if she were still able to make such trips.

Then there’s my own experience with medical incompetence. My husband is a hemophiliac. In 2010, on Thanksgiving, he woke up feeling terrible, and then upon going to the bathroom, realized he was having gastric bleeding. We notified his hematologist and went straight to the ER. BOTH of us, as well as the hematologist, who is on staff at the same hospital, instructed the ER doctor that hubby needed Factor 8 administered ASAP. But the ER doc waited, and waited, and waited again. It wasn’t until 10 HOURS later, after hubby was transferred up to a bed, that they finally gave him the first infusion of clotting factor. By then it was too late, as he’d begun hemorrhaging. Within 30 minutes he was in crisis, with blood coming out of every orifice and the doctor forced to intubate him and put him on a vent in order to protect his airway from the incessant vomiting of blood. Luckily, my husband lived, and although his voice was altered for more than a year due to the intubation, he suffered no permanent damage. We did NOT sue, although many thought we should, only because, in the long run, we felt that since he did survive and had no permanent injury from the incident, there was little point. However, I did write a detailed letter to the hospital administration that strongly suggested they give that ER doctor some additional training, especially in regard to treating hemophiliacs who are bleeding. I don’t know if they ever did that, as no one from the hospital ever replied to my letter.

So when I hear “tort reform”, it scares me, because I don’t want my uncle’s kids, or my friend’s family, or myself (in the case of what happened with my husband) to be denied the right to pursue “justice” (because the ONLY time anyone changes anything is when a lawsuit forces them to) when bad doctors make mistakes that put patients’ lives at risk.

Guest
Barry Carol
Nov 17, 2012

Another aspect of the end of life care issue, of course, is the fact that resources are finite. With 45-50 million people with no health insurance at all, I think it is, at best, selfish and at worst, immoral to insist on a very expensive full court press when the prognosis is basically hopeless and expect someone else (taxpayers or insurers) to pay for the care. If the patient or family wants to pay for care with its own money if it can afford to, then by all means go for it.

With all the discussion leading up to the passage of the Affordable Care Act, we heard a lot about extending health insurance coverage to as many people as possible, in part, so they wouldn’t need to fear being driven into bankruptcy if they suffered an expensive illness or catastrophic medical event. We heard basically nothing, though, about the need for reasonable patient expectations.

In other developed countries with universal health coverage, they pride themselves on their culture of solidarity to ensure that everyone has health insurance. At the same time, though, doctors see it as part of their job to know and to care about costs and to be wise stewards of their economy’s finite resources. Patients, for their part, don’t put unreasonable demands on the system that their fellow countrymen will have to pay for. This includes accepting death when the time comes and not wanting to sue when there is a bad outcome even when doctors and hospitals did nothing wrong.

Guest
MD as HELL
Nov 17, 2012

Death is not always a bad outcome. It is a natural conclusion of life. I often tell families it is sad to end a great life with a bad death.

Advanced directives are fine, but when the moment is at hand is when the real deciding is done.

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Jeff Goldsmith
Nov 17, 2012

This is an incredibly courageous essay. Thank you, Kristen, for the plain speaking.

Thanks to Sarah Palin’s “cheap shot heard round the world”, we probably won’t be able to have an intelligent discussion of end-of-life issues for another decade. I don’t want the government anywhere near my decision about how end of life ought to go, but the comment above on not wanting to be sued drives a lot of the hospital and physician behavior described in this post. It isn’t about hospitals making money off these patients. Most are on Medicare, and the ICU is NOT a profit center.

In no place does our American fantasy about the miraculous power of our health system clash more directly with the brute realities. This post accurately describes much of what goes on in ICU’s both as futile and as torture. It is a comment on our bizarre culture that the default pathway for many of us at the end of life is exactly as described above. What the hell is wrong with us?

No more powerful case can possilbly be made for advanced directives. They are not enough. We will need mechanisms to ASSURE that our advance directives are carried out. As it is clear that we cannot speak for ourselves when there are tubes down our throats.

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Susan Ferrari
Nov 17, 2012

I’m impressed that you were able to write about this as clearly and passionately as you have. As a fellow ICU nurse, with about 18 years of experience, for your own sanity, you will need to find a way to leave some of this at the door when you leave work. If you don’t it will eat away at your heart.

Over time I’ve seen the situation worsen rather than improve. Largely two types of families exist: the ones that are excessively involved micromanaging medical and nursing care, threatening legal action, or being confrontational and accusatory as a way to exercise power; the opposite, is the family that is absent, unreachable, avoids contact or decisions, apparently delegating the “care” of their loved one to strangers because they can’t face it or consider it a low priority. I’ve joked that we should require family to provide anywhere from 2 to 8 hours of the direct care their loved one needs, especially while they are in the ICU so that experience can inform their decisions about what is best for the family member. But there are too many legal issues that would get in the way of such a move.

I believe that much of why we are where we are with this advanced interventional effort to cheat death has to do with the way the medical (and this includes nursing, ancillary professions, and administration) industry has branded medicine. The medical industry has convinced people that it is omnipotent ( to back off this would undermine it’s leverage in the economy), and because of the shift to family decision/patient authority (without responsibility for outcome or cost) people use this as means to control something. You could also look at who is prolonging “life” and what that means. I suggest that those who have felt that they have little control over their own life circumstances (status, income, success or failure) will use this venue to exert control. They want to hold onto something that is important to them, whether physically or emotionally, and will do so regardless of what happens to the person experiencing the illness. It’s kind of like how a young child holds onto a favorite stuffed animal or blanket: it could be in pieces, and falling apart, but the attachment remains strong. I realize there’s a bigger picture to why people are choosing this intensely painful path, but without the medical community choosing to reframe how decisions are made and what constitutes a good outcome, this arena will continue to be a venue for these heart wrenching and tortuous scenarios to play out.

Take care of yourself. I wish you the best with your nursing career and hope to hear more from you.

Guest
Nov 17, 2012

Nicely stated.

Guest
No One Gets Out Of This Alive
Nov 26, 2012

So sad. Did I read correctly that a third of all medical dollars are spent on the last year of life?

Guest
Nov 26, 2012

I have never understood the mentality of life no matter what! Death is a part of life and more people need to deal with their feelings toward death long before they are terminally ill or elderly. I am a nurse and I want to have DNR status for all the well stated reasons in this article. Make no mistake DNR is a kinder way to leave this world. And just in case anyone thinks I haven’t been faced with making the call whether to adhere to previous decisions to honor DNR arrangements Nothing could be further from the truth……..I adhered to my Mother’s, Father’s and aunt’s decisions for DNR. Modern medicine has made great strides in saving lives and extending life but quality of life should be considered in making these difficult decisions.

Guest

Yes, yes, yes! The tatoo reference is spot on. I intend to have “do not admit me to any hospital under any circumstances” on my chest and “feed only chocolate chip cookies” on my back. Death is natural. Litigation is not. Let’s have the discussion about these things without the “death panels” and exterminating grandma talk. See medicineforreal.wordpress.com for more on this.

Guest
Jules
Nov 27, 2012

Go to a lawyer and get a willl, living will, living trust, property power of attorney, and health care power of attorney. Be sure your executor is in agreement with the chosen terms of your living will. My state has a standard document. My attorney said that, while he could not advise me which option to choose, he could answer any questions I had about the document. I asked him which my parents chose – option 3, no heroic measures (no code equivalent in my state) – and said he chose the same. I have read that some states do not allow provisions made on other states’ living wills, the most egregious being Minnesota. Everyone there is a fullcode.

Anyway, when it’s time, I’ll talk to my doctor and give him/her a copy of my living will for the file. I bring a copy to the hospital to be scanned whenever I need a procedure.

It might be overkill, but I’d rather die as painlessly and peacefully as possible. Disclaimer: IANAL, nor am I a health care professional, just someone very glad that my parents had the best care and counsel they did. They’ve been dead 1 years, but it was a real comfort knowing neither went through prolonged suffering. That would have made it much worse.