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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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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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.
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.
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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.
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?
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..
well..don’t worry..there is always the death panels that obama plans…organ harvesting if need be and can be serviced..
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!
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”.
I completely agree with you. Sadly my sister has advanced lung cancer and is on a ventilator in ICU. She has c diff, tumors in all her airways and several growing all around her trachea and main airways on the outside as well. She is developing SVC and one of the tumors is encroaching upon her heart.
She is only 46. Unlike the folks you describe though she is awake, fully lucid and struggling mightily with “choosing” to remove the ventilator and pass on. She spends the day writing us notes about what she wants her funeral to be like, where she wants her ashes spread, who she wants to have what, etc. It’s heartbreaking to watch her struggle. We’re struggling too.
She knows with each day her condition becomes more critical and that she will die. She has filled out a DNR in the event that something happens prior to her finishing her “business” and goodbyes and in her words “being done” and ready for the docs to remove her ventilator.
All the docs and nurses say she’s an anomoly–that most folks can’t bear the tube, stay doped up and quickly after being in that position aren’t lucid and aware. They’ve all been fantastic and supportive of her.
Can’t imagine how she feels. She’s a brave, strong woman. Regardless of her lucidity and ability to communicate she is not living and she knows that. Now it’s just a matter of her finding the courage to let go.
We will wait patiently by and allow her that time and in her case, I’m glad that the ICU unit and the amazing nurses and doctors are there to give her that life sustaining care to give her the time she needs to come to peace with her own passing.
Thank you for writing such an honest, sincere, loving blog on this topic.
Hey, Nursewhatever..do me a favor..please, just shut up..you’re obviously a stupid conspiracy theory Fox News watcher, probably have nothing better to do..what is even the point of your ramblings? Have you no idea what nurses actually do for a living? Of course a nurse wrote this article, you idiot. I am an icu nurse, & yes, what she describes is exactly what I see all of the time. You talk about suffering & pain as if the people she’s describing are running a marathon, like we should be telling our patients no pain no gain? I mean, are you for real or what? How can you be this stupid? Get your head out of your ass & realize what it is this article is actually talking about before posting such ridiculous comments. Go back to listening to Rush & Glenn & enjoy your ignorance moron..
Meaningful recovery? Who are you to judge what is meaningful recovery. You don’t really know what is possible. Sometimes people heal beyond doctors and experts expectations. Miraculous recoveries are possible. I believe in giving it a chance and if there is a bad result at least everything possible was done in favor of LIFE.
Life equals suffering! Ok that means you are ALIVE. When you feel pain or suffer you are ALIVE! it is ok to have pain sometimes. Even when we are trying to save a life! especially to save a life. I understand you want them not to suffer when trying to save a life but like other things we must do for our health and well being sometimes that means discomfort. Vaccines are painful to children but they need them. surgery is painful. Dead people don’t suffer or feel pain.
Yea right. A nurse said this or that. WHO WROTE THIS PROPAGANDA? are we really that stupid to believe a nurse said this?
Kristy, this is such a great position that your instruction has created! I agree with your response ” just because we can, doesn’t mean we should.”
Thank you for this very thoughtful piece! I experience these exact same moral and ethical quandaries on a daily basis. I could not have written my thoughts on the subject down any better than this. I believe this is one of the top five biggest problems this country faces in regards to healthcare. This debate / discussion needs to make its way to the forefront of everyone’s mind. Eventually everyone will be faced directly or indirectly with this very difficult situation.
Annie you are blessed. My dad could be alive today but icu doctor wanted to let him go without trying the tracheostomy. As his power of attorney I couldn’t do anything because he didn’t have any living will. now i blame myself and i think it will haunt me as long as i will be alive. May God bless your grandma and your family.
Thanks Catek, after reading your comment i am feeling a bit better. now i know about the living will, i wish my dad had one.
So sorry Jeff, we had same kind of situation with my dad and it’s almost two months have been passed but i am not able to sleep properly. it;s haunting me day and night, trying to pray more to console myself. if he had a tracheostomy then he could live a few more months , may be year – who knows but doctor didn’t want to do it. so they gave him the pain killer and he died within a few hours. can’t forget and can’t live like this but have to live. God bless you.
I don’t think you get the point. My grandma had a stroke and in the hospital they said she was basically brain dead and they didn’t help her with anything and the doctors wanted to take her off of life support. They kept badgering my family. I remember feeling guilty that I wanted to give my grandma a chance to survive because the doctors and nurses kept telling us to end it and take her off of support and let her die from dehydration. Guess what? After 2 whole months of being unresponsive and on life support she just woke up and started to get better. She regained a lot and could talk and everything was back to normal, except for a few speech issues. She is still alive today and happy and healthy and had a second stroke where the same thing happened and the hospital badgered us about stopping treatment and letting her die. One doctor even told us that he’d had enough and that she was wasting space. Well, she survived that too and is well and alive today. Even after that the doctors said “well she’s not going to have long anyways” and she has lived a long time after that. Even though it is a bad experience, it has to be done for any chance to survive and everyone deserves the right to FIGHT for thier life. It is hard but it can be worth it and even though it is rare, it can’t exist unless people have hope for thier loved ones. She survived those doctors and has seen her grandchildren and has seen a lot in life all because we would not allow our selves to submit to doctors who looked at us as burdens.
I believe that because of the horrific endings you guys so frequently see and are a part of, the culture in some hospitals is to cheat; to just let the elderly lie there and die there with only minimal, almost simulated treatment – while doing everything possible to discourage an ICU admission. This includes slow codes, no codes and some record falsification or “slanting” regarding family wishes – all done with a knowing nod and wink. Regulatory agencies are aware as well, but (out of realistic compassion, of course) look the other way.
I strongly feel that my elderly father got sucked into just such a black hole, from which he had no chance to pull out. It cost him his life (see holycrosshealth.com).
Why can’t you all just give it up. This is not a discussion that anyone other than the people involved can make their own decisions.
As a 79 year old I don’t want all of this life saving, bankruptcy producing medical care that is going to continue my life for another three months. I was born and I will die as will we all. Lets face facts…there is no escaping and medical care isn’t going to provide the magic bullet. But, you or your family or your estate will pay for it if you want to try to get it.
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?
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?
I actually found the descriptions to be pretty spot-on. Of course, it doesn’t apply to everyone who ends up in the ICU, and she explained that, but it covers a fair number, especially larger, academic hospitals.
I’ve hit that wall, where I have become cynical, where I have compartmentalized my work, where I have stopped caring, where I am loathe to go into work because I face this exact scenario over and over again. I cringe when people call me an “angel of mercy” or whenever one of those feel-good Johnson and Johnson commercial comes on tv. It is why I am getting out of floor nursing.
I just can’t do this anymore.
I am a surgical intensivist. It is a routine to talk to patients and their families, and our standard of care to provide care according to the patient and family wishes in the context of the patient’s illness and survivability. It is also routine to make people DNR/DNI or withdraw support when appropriate.
I found the article to be sensationalistic, overly dramatic, and unrepresentative of the good work that’s done in ICU’s on a daily basis.
While a fresh perspective is sometimes useful, I think that in this case, it is an unseasoned opinion from an inexperienced first year nurse who likely should choose another area to practice in.
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.
Jeff, my father died 7 years ago. I have been an ICU nurse, an ER nurse and a nursing supervisor in hospitals. My dad, mom and I made decisions about his treatment as we went along. After he died, I kept thinking that there must have been something I missed or someone else missed. I beat myself up for quite some time. We are our own worst critics. Do not beat yourself up, it is a waste of energy. Instead remember the good things and I know your mom did not hold anything against you. Please speak with a councilor if you can’t get past second guessing yourself.
Your point about making sure the family understands is well taken. It is something the medical professionals try to do, but unfortunately, it doesn’t always happen. It is something that all people should discuss with their doctor in the office, before these decisions need to be put into action. I firmly believe everyone should have a living will.
To you doctors and nurses reading this blog PLEASE make sure the family understands what the implications of there extreme measures decisions are. My Mom had respiratory failure while she was in the hospital. By the time I got there with my sister Mom was in ICU with a breathing respirator and a feeding tube. The first half hour we were there she had x rays taken and a vial of blood taken for tests. A nurse came in for a second vial of blood and my Mom was so anemic and wasted from her condition and by all the poking and prodding she went through in emergency the night before they could not get a sample no matter how many time they stuck her and moved the needles around in her veins. We talked to the doctor and he suggested comfort care for Mom. “She would be placed in a room and kept comfortable and nature would take it’s course”. He said Mom’s quality of life would be “horrible” and the outlook was not good. So we made the decision to end life support. Mom passed within a half hour in the ICU. I wish the doctor had informed me she would pass so quickly. I was waiting for them to put here in another room and we would have time to say a proper goodbye. In hindsight we should have kept here at home and let her pass there. It will haunt me for life.
Well here is my dilemma. My mother was in her 80s and had Parkinsons which had progressed to the point that she was in diapers, having trouble with her speech, walking mostly with a walker and having trouble even with that. She had all this when she had a left frontal lobe stroke. After her stroke she could not swallow and was on a ventilator. The doctors were definitely giving us the option to let her go peacefully. I was all for pulling the vent and letting her go, but she had made clear to every one that she never wanted care with held; so my siblings had a trache put in and feeding tube put in and she was moved to a rehab acute care and then onto a nursing home, She received therapy and has full mobility of her right side again .She is swallowing and the trache has healed up and she is even talking, smiling, and laughing. The talking is very difficult for her and her speech is limited but she is fully cognizant. She is mostly bedridden although she can sit up, she still has a feeding tube and often suffers the diarrhea bacterial infections described above. I am sure she is happy to be alive. So you see I would have pulled the plug prematurely. Her life is so limited. This whole experience and seeing that she seems truly happy to be alive and is improving so much makes me think that life is truly a difficult thing to appraise. I have often thought that at both neonatal care and end of life that just because the medical profession can, doesnt mean it should. I have always felt a natural birth and death is best and that extreme measures to keep extremely premature babies as well as extremely ill elderly alive, may be morally and ethically wrong. I have now witnesses both cases an elderly person and a 6mos gestational baby with chromosomal abnormalities in which extreme interventions have paid off and the outcomes have resulted in great joy for the family and patients. Although frankly in my life I do not hope or care for such extreme interventions. I also realize that my view of life and death is not shared by most people.
It’s hard to find experienced people about this subject, but you sound like you know what you’re talking about!
Thanks
Hopefully, as people achieve greater understanding about making informed decisions about end of life care and about what happens at the end of life in the ICU, we will have fewer cases like the ones Kristen described. At that point people like Mr. Fenton will serve as rare reminders on why we would never torture ourselves and our loved ones with these types of interventions at the end of life. Be careful what you wish for, Mr. Fenton and Ms. Mower.
I read and I stand by my suggestion. But, implode if you must.
Thanks for the would be advice Holly. But the above comments were in reference to a previous poster. And they stand on their own, they don’t necessarily have to have anything to do with healthcare, simply a life philosophy. Obviously you don’t ponder any of life’s questions either for suggesting to me that I should talk to someone simply because I made the above statements. Clearly I can think for myself & don’t need my feelings or opinions validated by a therapist. In short Holly, try reading a little more of what a person says & put things into their proper context before you make stupid comments.
Uh, Jared? I seriously hope you can find someone to talk to, because you are flashing “burnout” in huge, neon lights. Please take care of yourself.
We need to bury the days when things were done “because the doctor said so”. If discussion and decisions are opened up to the multi-disciplinary team, the weight of the decisions won’t fall so heavily on the physician’s shoulders. I won’t get in