Knowing When To Stop

Photo: Nicholas_T

“When do we stop?” my patient’s son asked me.

“That’s really hard to know,” I answered.

We were discussing when to stop making  interventions in hopes of trying to save his father’s life.  He’d been diagnosed with a severe gastrointestinal bleed from a stomach ulcer. Though most bleeding of this kind is identified in time and stopped, my patient had lost nearly half his blood volume and passed out before anyone realized anything was wrong.  By the time his family had brought him to the emergency room, he was hypotensive, unconscious, and in acute kidney and liver failure.  He was admitted directly to the ICU, transfused eight units of blood, and put on a ventilator.  Forty-eight hours later, his kidney function had worsened enough that we were considering beginning him on dialysis, and he’d developed an aspiration pneumonia.

“It’s just one thing after another,” his son lamented when I told his family this news.

I nodded.  We see this commonly, I told him.  When one organ system starts to fail for any reason, others frequently follow, like lemmings diving off a cliff, either as a direct result of the failure of the first organ system or as a result of the same insult that caused the first organ system to fail (as in his father’s case).  Additionally, if there’s one adage in medicine that’s both tragically true and unappreciated by laypeople it’s that interventions (like ventilators) to reverse or manage complications (like brainstem injury) frequently lead to more complications (like aspiration pneumonia).

Brainstem testing in my patient on the third day, however, revealed improvement, suggesting the initial damage he’d sustained as a result of prolonged low blood pressure might be at least partially reversible.  And though on that particular day his kidney function had taken a slight turn for the worse and we’d decided to begin dialysis (hoping to use it as a bridge until his kidney function recovered completely) the day before it had actually improved.  Which direction was it really going?  We didn’t know.  His liver, on the other hand, was definitely coming back.

So many difficult questions confronted us, questions we needed to ask not just once but every day:  which systems were improving?  Which were worsening?  Which could improve and which couldn’t?  The answers changed every day as the enormous volume of data we collected on every aspect of his body’s function changed.  Individually, each organ system that had taken a hit retained the potential to heal—no insult, as far as we could tell, was definitively irreversible.  But we also knew, statistically speaking, that with each additional organ system affected in a critically ill patient, the likelihood that the patient will recover diminishes significantly.  Every cog in the human body retains influence on every other cog, it seems.

The most challenging problem in inpatient medicine—especially in ICU medicine—turns out not to be figuring out how to fix what’s broken, but rather figuring out when not to try.  We’re confronted by this problem in other contexts in medicine as well, however.  With patients who suffer from dementia, that cruelest of diseases (which always progresses), we often have to ask ourselves when to stop intervening.  Dementia, many people don’t realize, is uniformly fatal.  Given enough time, all demented patients will become non-verbal and stop eating.  At what point, then, do we withhold antibiotics for pneumonia, for example?  Or insert a feeding tube (via the skin overlying the stomach) to augment declining nutrition?  For a doctor lacking a personal connection to the human being their severely demented patient once was, these choices are difficult at best.  For family members who retain a vivid picture of their loved one in full possession of all their faculties, they’re agonizing.  For this reason, laying the burden of making life-and-death decisions on family members has always struck me as particularly cruel.  And yet a balance must be struck between assuming paternal authority to make such decisions unilaterally in order to spare families from feeling responsible for ending their loved one’s life and allowing family members to act as surrogate decision makers who must often guess at what their loved one would have wanted (as often no discussion of end-of-life wishes ever took place).  And the reality is that even when patients themselves are awake, alert, and competent, they often have difficulty themselves navigating all the potential risks and benefits of the interventions we in the medical profession are able to offer.

So we simply all do our best.  We try to balance a reaction to today’s data and the interventions they suggest we make with the broader picture and the likely long-term outcome.  Keeping a sharp eye on both, knowing which to believe more on any given day, is extremely challenging.  But this is where the art of medicine lives and wisdom and compassion are most vitally required.

In the end, my patient survived.  His kidneys recovered and he came off dialysis.  But the injury to his brain proved extensive:  he was no longer able communicate in any way other than through grunts and could no longer bathe, dress, or feed himself.  Prior to his hospitalization, he’d been a CPA heading up a busy, privately-owned business.  Afterward, he required twenty-four hour care.  I wanted to ask him if he was glad he’d survived, if we’d made the right choices for him.  But it wasn’t clear to me at that point if he would have even understood the question.

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20 comments to Knowing When To Stop

  • Maureen

    That’s so sad. I hoped when half way through the story it would have a happy ending but not so.

  • Sidney Chan

    Alex, my mom suffered a massive stroke in her left brain (she was right-handed) earlier this year and after consulting with her doctors at UIC, we made the difficult decision of withholding extraneous medical interventions and letting her go in peace. It was a difficult decision and months later, I still cry when thinking about my mom’s passing and hope we had made the right decision. Thank you for sharing your insight as a physician and as always, your wisdom and your compassion.

    Sidney: My condolences.

    Alex

  • Carol

    I think I know his answer. Who would want to live like that? Not me and not anyone I have asked. Quality of life is much more important than quantity. And I believe God was telling this man it was his time to die. No one listened and he is paying the price!

  • anianiau

    You have raised an interesting question, but there is one issue you haven’t addressed: money. Who will pay for such extended care?

    However, my concern about money isn’t addressed to the first case you’ve presented, but to those you’ve mentioned in passing: patients well on the road to dementia—a condition you’ve noted is fatal.

    Today, a substantial minority of our citizens lack even the basics of health insurance, and the costs of Medicare continue to rise. Perhaps we should rethink what interventions we offer to those patients who have gone down the pathway to dementia. Feeding tubes? To what end? Ventilators? Why even begin? IV antibiotics for pneumonia? For these patients, admission to the ICU makes no sense, yet it’s not uncommonly done. Both my head and my heart tell me that comfort care is the path to follow.

    Yet somehow, Medicare continues to fund mammograms, biopsies, surgeries and even chemo for demented women whose perception is that they are being tortured. Some physicians continue PSA testing for male patients with dementia. A recent article in the NEJM has a list of conditions in which the authors suggest such treatments are totally inappropriate.

    Yes, I am saying that at least partly, it’s a matter of money. (The NEJM agrees.) IMHO, treatment for patients with dementia should be available, but their treatment costs (if the family is insistent on treatment) should be borne by the family, not by the taxpayer.

    Medicine can now prolong the dying process almost indefinitely, through the use of expensive technologies and medications that hold no hope of cure. But the outcome—death—is the same. It just takes a lot longer.

    I don’t remember the author of this quote, but I think he had a point.

    “Thou needst not strive
    Officiously to keep alive.”

    It’s not enough to ask ALL patients’ families, What do you want done? We also need to help them understand that in some instances and at a certain point, interventions are futile. Society may pay the financial costs, but the patients pay dearly in suffering, confusion and lost quality of life. Patients with end-stage disease often live longer if they enter hospice programs than if they continue intensive medical interventions.

    And especially, physicians need to convey that in the case of a demented patient, no intervention can ever bring back the person their loved one once was.

  • Chris

    So, how did the son/family feel about the outcome? Did your patient end up in a nursing home then? Or did family members assume his care? Did he/they have any advance directives in place?

    Chris: I’m afraid I don’t know the answers to any of your questions except the last (and to that one, yes).

    Alex

  • Brendalee

    Alex, I read your story with a heavy heart. It saddens me that the family had to go through such an ordeal, not to even mention the pt and what he went through. Maybe now, as he lives, he doesn’t have an inclination of his total debility and need for total care? Isn’t end-stage dementia terribly hard on the family, with the pt not really understanding the degree of their debility? I know a pt of mine, her husband was placed in a nursing home, private pay, b/c she couldn’t care for him any more. It was draining her financially and emotionally. She was crying, telling me for the first time her husband didn’t recognize her when she visited him, and she didn’t know how much longer she could afford to pay for his care, at over $4,000/month. I wanted to tell her that it was OK to let him go b/c he left a long time ago, but I wasn’t sure if it was my place. It broke my heart seeing her in such sorrow, not being able to offer anything to her except listening. Maybe that was enough at that time? I believe as our bodies last longer and longer, way past the time our brains are functioning, the questions and the decisions will get harder and harder. My mother, who is 73 and in fairly good health, wants every miracle medical science can offer her to stay in this world. The cost is extremely high, both financially and emotionally. Does it have to do with the inability to let go, the fear of the unknown, and the fear of the emotional pain that comes with loss? I work with end-stage dementia often…no one is home upstairs, and yet, the family just wants them to be who they were…which will never happen. It truly saddens me.

    Brendalee: Me, too.

    Alex

  • Audrey from MA

    How sad. This man deserved comfort & palliative care.

    I know I wouldn’t want to survive in his condition.

    We need to learn to let go.

  • Chris

    If we have never looked closely at end-of-life issues; if we have thought that those issues are only for medical people to think about/meditate upon; if we have never looked at a frail elderly person or a person with dementia and tried to imagine ourselves in his/her position; if we have never developed the habit of walking a mile in someone else’s shoes; if we have never learned to identify with another, not matter what their age or stage . . . then we will hang on and be unable to let go. Never having considered death, our own or that of someone close to us . . . is blindness. We will be blind and fearful about decisions around end-of-life.

    Why do we set ourselves up to be blind and fearful?!

    Alex prompts us, with posts such as this, to consider our mortality and that of others. Never mind the anxiety that this consideration may bring. In time, the anxiety diminishes a little or a lot. Guts is what we need in order to keep ourselves from being blind and fearful!

    Chris: Great comment.

    Alex

  • Linda Rice MD

    Alex, thank you for an insightful essay. Oftentimes when I have “end-of-life” discussions with my well patients, to help them fill out their Living Will documents, they tell me of situations where a loved one had a living will but ended up with multiple interventions anyway, to no good end. Your case illustrates well how that happens: it is not always clear at the onset what that outcome will be. The difficulty, as you discuss, is in deciding when enough is enough. If we all had a crystal ball to look into the future, there are a lot of decisions we might make differently! We do the best we can with the information we have on hand, and sometimes people surprise us by full recovery when things have looked extremely bleak, and other times the outcome, sadly, is as you describe. In dealing with the issue of how far to go with the demented patient, or for that matter any number of other situations where aggressive interventions will never return the patient to any good quality of life, we are often forced to provide what we know are futile treatments because the laws require interventions unless the patient or their proxy make a “decision” to forego life-prolonging treatments. Both lawmakers and families don’t understand that this would be analogous to requiring that we prescribe an unproven drug when we know it won’t help, just because they request it! And yet in that case, we are allowed to use our medical judgment and gently say no, it will not help.

    Linda: Yes, exactly.

    Alex

  • My dad, a fit and fine 86 year old, went on a walk, fell down and suffered a femur fracture. And then as you say one cog leading to another: 13 bottles of blood, fresh frozen plasma, platelets, mesenteric angiography to try find out what on earth was the matter, finally a high risk colonoscopy, yes, on the ventilator, arrhythmia, lung infection that was on and off, and then very bad, and finally renal failure.

    In those three months outside the ICU, I grew up ten years. Not one antibiotic or antifungal untried. And other than the last one day, he was conscious, he knew, he knew he was going.

    I count the days, I go on.

    In India, the patient pays, or God bless.

  • Revpj

    As a pastor, I often am called in to assist the family in making such decisions, and it is indeed difficult at best. From a purely medical standpoint you have the unenviable task of playing God. Trying to see how things will turn out in the end. From a spiritual standpoint, I have the task of helping families turn to their faith and know that it’s ultimately ok to let their loved one go when the time comes.

  • Frances

    What I appreciate about this entry is how it clarified the issue. So often in these situations we carry on valiantly without pausing to consider the overall process of what’s going on. For myself, it’s the heartache caused by trying to do more, and more, with less and less effect that makes these types of circumstances so difficult, combined with the lack of easy answers to such dilemmas.

    It provides me a valuable reminder of the need to practice compassion when these situations arise; to extend it to all the people involved, and also to myself.

  • Barbara

    My 92-year-old mother who has dementia and lives in a nursing home fell and broke her hip. The doctors told me that the outcome for a patient her age with this type of injury is usually not good. I prayed that God would take her. My mother stopped being my mother years ago. The dementia had seen to that. I prayed that she would be released from this world. She would never want to live the way she was living. She came through the surgery with flying colors. She went on to recover quickly and fully and is walking again. My husband swears that she recovered as quickly as she did because she had no idea what was wrong and what was happening—she never worried about a thing. Her body is healthy but her mind is gone. It is so unfair.

    Barbara: It is so unfair. I’m so sorry you’re going through this.

    Alex

  • anne

    It seems like relief from suffering is what people are hoping for (at least, suffering without a positive goal or purpose). But how much are the demented suffering? I’ve heard it said that the spiral into dementia is thought by some to be a sort of unwinding of the brain as it loses function, but not necessarily felt as suffering by the individual. My mother-in-law went through this process over 6 years before she finally died (from pneumonia), and her body was quite healthy throughout that time. I often wondered how it seemed from her side. The relief from suffering of those around the patient seems to be a real puzzle, however.

  • Kathy

    I would guess that the son feared this outcome, which is why he asked the question.

    My father had a living will and spoke to me and my siblings several times about his desire to never be on life support. When he had a major stroke at the age of 80 and was taken, unconscious, to a hospital by ambulance, he was put on a respirator without our knowledge. We told the doctors that his living will requested that a respirator not be used and they said the living will didn’t matter. Once the respirator was on it had to stay. (We were told this might have been because it was a Catholic hospital.) A well-meaning pulmonary technician actually said to me that I shouldn’t worry because he could live for years like this! Anyway we finally found a sympathetic doctor who removed the respirator and he died a few days later. I never doubted that we did the right thing.

  • Diana Decker

    Your explanation of dementia—always fatal, loss of appetite and memory—was very helpful. My oldest sister died May 3 after a long struggle after a hip replacement surgery (2006) during which her lung was punctured. She stopped eating and her ability to remember things began to disappear, except for the names (and spellings) of teachers she worked with years ago. Last fall, her daughter took her to a new doctor who diagnosed her with moderate dementia. I emailed my other sister, saying that moderate should mean it’s taken a while to develop—and wondering why other doctors didn’t recognize it earlier. Her response, “Yes.” My oldest sister was 75, but most of my relatives lived until their late 80s or early 90s with very sharp minds. She lived in Florida, near her daughter, who did everything possible to help her mom.

  • et

    Dementia, many people don’t realize, is uniformly fatal.

    As is life.

    We should consider this more often in making all our decisions.

  • One thing that is not addressed in the original post or any of the comments I’ve read so far is time. If I’ve read correctly, the man was a fully active alert adult just before he was admitted to the ICU.

    I do not think that having to make end-of-life decisions in that situation is comparable to making them for a person who has over the years succumbed to dementia or another progressive disease. There is TIME to think and accept in those situations.

    Am I wrong in thinking that until the body recovered, the state of the man’s mental condition was not known?

    My husband has mild dementia now. He is 71 and he is going to have a stent tomorrow. He is also going to continue to have his bladder cancer monitored and treated. He’s going to continue taking medications for his diabetes. His colon and prostate cancers have been deemed cured, but unless his dementia has progressed significantly, he will still have a colonoscopy in 5 years as well as a PSA test occasionally.

    Since it is possible that at least some of his dementia is caused by normal pressure hydrocephalus, after his stent is placed and his cardiologist deems him ready for elective surgery, we’re going to explore the possibility of a shunt.

    I am not a newcomer to caring for people with dementia. Before my husband, there was my mother, my father-in-law, my step-mother… and I am fully supportive of hospice care at the end of life.

    I am also not a newcomer to caring for people who wish their lives had not been saved by modern medical interventions such as ventilators. The major depression that sometimes follows traumatic brain injury is a doozy. Yet… he (not my husband, but another relative) has today told jokes, laughed at mine, and expressed a desire to die. How do you deal with that kind of mercurial change of mood?

    The point I want to make is that these kind of decisions cannot be addressed morally with policies or rules written by bureaucrats—each case is different. Three different times I have said “no interventions, let them go” and twice I have said “do whatever you can.” In my husband’s case, even if he has a “not-stoppable” dementia, he still has several years before he “loses his mind completely” and I’m not giving those up just yet.

    Bottom line: more often than not there is no easy, bright line answer to the question of when to cease medical interventions.

    Donna: Excellent points, all.

    Alex

  • [...] wield this technology to prolong suffering intentionally.  As I argued in a previous post, Knowing When To Stop, it’s quite difficult to predict the timing of  death, even in the terminally ill.  In one [...]

  • john

    OMG, I am feeling terrible, watching this helpless man. The story itself is repeating from time to time and people getting caught and diagnosed too many times too late.

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