Absurd: Resuscitating 90-year-olds with Dementia or Metastatic Cancer

Last month on the wards, I unilaterally told two patients’ families that we were not going to resuscitate their loved ones. My residents were horrified – this violated the DNR playbook – but the alternative seemed both immoral and absurd.

What do you think?

In deference to HIPAA, I’ve altered a few clinically irrelevant factoids, but here’s the gist: In both cases, the patients were elderly Asians. One was a 92-year-old nursing home dweller with severe dementia; prior to admission he was bed bound and could not recognize his family members. He was admitted with pneumonia and ARDS, and had been intubated for nearly a month when I assumed his care. My predecessor had held a number of family meetings; in each, the family insisted on doing “everything,” and that’s precisely what we did. The family continued to demand the full court press, even as his organs shut down, one after another. On his final day, he required high doses of pressors and as much respiratory support as his mechanical ventilator could muster. Nevertheless, he barely maintained a blood pressure and oxygen saturation compatible with aerobic survival.

I described the situation to the patient’s family, who continued to want to “do everything,” including CPR. I told them that the time had come to stop. “At this point,” I said a bit sternly, “the chances of his surviving are nearly nil, and I can’t be party to torturing him during his death. So we won’t do it.”

I saw my resident’s jaw drop. “What would you have done if the family had demanded that we continue to push forward?” she asked me later. I would have refused, I told her, and offered to try to find another doctor. But instead, they appeared relieved as we shifted to comfort care. The patient died a few hours later, surrounded by his loving family.

The second case also involved a patient in her early 90s, this one riddled with metastatic cancer. She was bed bound and in chronic pain. I approached the family to ask them what they wanted us to do if she deteriorated. “Everything,” was the predictable answer. “We will do everything we can,” I said, “to keep her comfortable and get her home. But CPR in 90-year-olds with widely metastatic cancer is all-but-futile, and I think it would be wrong. So we won’t do that.” Again, I heard my resident gasp. But again, the family didn’t fight the DNR order.

As recently as few years ago, my approach would have been different. Being a bit of a student of ethics and having written about DNRs and CPR in the past (my early research was on ICU care for AIDS patients), I generally support the modern ethical paradigm, which emphasizes patient autonomy over all else. In essence, it says, “Doctor, you can choose not to offer therapy – CPR, ICUs, transfusions, dialysis – only when the therapy is futile. If it is not, then the patient’s judgment rules the day – in essence, all life-sustaining treatments are informed consent procedures. And, if the patient is unable to participate in these discussions, we use proxy decision-makers (a formal DPOA or a close family member) to tell us what the patient would have wanted.”

I embraced this model for most of my career, and still believe that it has much to commend it. It prevents we doctor-types from being too paternalistic – from substituting our opinions for those of patients and family members. It also prompts us to give patients and loved ones the information they need to make informed choices. Finally, it explicitly excludes considerations of resource use, a noble bit of cognitive insulation, since in an ideal world patients and families wouldn’t have to worry about the expense of CPR or dialysis when deciding whether to accept life-sustaining care.

Because physicians have retained paternalistic control over only the sliver of terrain called “futility,” many scholars have struggled to define what this word means. I like the Schneiderman definition as a starting point: when physicians conclude that there have been no successes in 100 similar cases, that’s futile. (The definition hinges on a convenient statistical shortcut: the 95% confidence interval of 0 successes in n trials is 0, 3/n. In other words, 0 successes in 100 cases yields a 95% confidence interval of 0-3%, a range that many people are comfortable calling “futile”).

I once described the modern ethical algorithm to one of my residents and simplified it by saying that the world could basically be divided into two buckets: futility (which is very rare), and everything else. If care was truly futile, we could paternalistically not offer it – we have “no obligation to offer futile care.” But all non-futile care (the vast majority of situations) should generate a discussion with patients or proxies in which we blandly give them prognostic data and perhaps a weakly-worded recommendation, and simply wait for them to decide.

The resident was a smart guy. “Seems to me that we need a third bucket,” he said tartly.

And we do. In the case of my nonagenarian with sepsis who was dying despite maximal ICU support, one could argue that his care was physiologically futile: we were doing everything we could but it wasn’t working. But the family “had faith” and – had they pressed me – I’m not sure I could have said with 1000 percent certainty that our treatments has no chance of working. Rather, it was crystal clear that the burdens of continued aggressive care outweighed the benefits. Ditto for the nonagenarian with metastatic cancer: CPR (had she needed it) might not have been futile, but it just seemed so very wrong in every way.

But why resurrect the dread paternalism – which violates American ideals of self-determination and risks the substitution of our own biases and even conflicts of interests? Wouldn’t families agree to withhold aggressive care if you just gave them the facts, accompanied perhaps by a bit of crepe-hanging spin?

Why indeed? Because our ethical model takes us to places (quite often, I’m finding) that are both absurd and morally wrong. Absurd: how can we justify CPR on demented 90-year-olds? Or those with metastatic cancer? Morally wrong: I have come to believe that our reluctance to exercise thoughtful paternalism – to say, “this would be wrong and I won’t do it” – leaves families in the gut-wrenching position of being forced to shoulder a lifetime of guilt for having endorsed actions (or lack of actions) that allowed their loved one to die. Many families, particularly those of certain cultures (in my experience, Asian and Russian families are the least likely to consider limiting care), simply cannot tolerate this burden, or have belief systems that cannot countenance any limits.

Which brings me to the final absurdity: money. Each day in an ICU costs someone $5,000-20,000. There are 50 million uninsured people in our country, the public schools are terrible, there are homeless people outside my window, the bridges are falling down, and GM is bankrupt. Can anyone really argue with a straight face that we still have the luxury of offering “everything” to 90-year-olds with dementia? It is a cop-out to say that doctors shouldn’t do “bedside rationing” – yes, I know the arguments: the patient needs to know that I am advocating for him (“The Doctor’s Master” can only be the patient, not “society”, famously wrote Levinsky a generation ago), there is no guarantee that the money saved won’t be spent on Iraq, Bridges to Nowhere, B1 Bombers, yada yada. But these are straw men. Squandering precious resources because we can’t say no is just plain wrong, and I believe everybody knows it. We just don’t know how to create that third bucket without doing violence to an ethical framework that has generally served us well.

And, of course, through the magic of our healthcare insurance system (in these situations, even patients who don’t have insurance are covered because the hospital picks up the bill), patients and families have the luxury of being entirely protected from the cost consequences of their decisions.  It would be interesting to see what would happen if, once doctors recommended no further aggressive care, patients or families faced a co-pay of even 10 percent of the extra cost. I’m guessing that the vast majority of decisions would be different. It’s easy to want “everything” when it is paid for out of somebody else’s checkbook.

Don’t get me wrong. I still buy into the general ethical model for decisions about life-sustaining treatment. For every patient in whom I unilaterally refuse to offer care that I consider to be wrong (it’s not like I go around making everybody a DNR without consulting with them), I find that I overturn the housestaff’s preliminary DNR orders at least twice. “I asked her if she wanted to be resuscitated, and she said no” is a common refrain I hear on morning rounds. And then I speak to the patient and learn that yes, the 68-year-old with moderate COPD would not want to be “stuck on a ventilator” or be “a vegetable.” On the other hand, when I ask, “if you developed an infection and needed to go on a breathing machine, and we thought you had a 50-50 chance of recovering, leaving the hospital, and getting back to where you were last month, would you want that?” they say, “Of course.” That’s not a DNR patient; that’s one whose preferences should be noted in case they do later “get stuck” on a vent.

For now, I feel like what I did in the cases of these two 90-year-olds is fully in sync with my Hippocratic oath. It is the usual practice – doing everything just because families couldn’t or wouldn’t say no – that is feeling increasingly unethical to me.

But this is tricky stuff. Am I the only one who has become more paternalistic in these matters?  The only one who is bothered by the absence of that third bucket? I’d love to hear your thoughts and practice.

15 Responses to “Absurd: Resuscitating 90-year-olds with Dementia or Metastatic Cancer”

  1. Eric Siegal March 11, 2008 at 3:40 pm #

    Right on as usual, Bob.

    In the name of advocacy for our patients, we have consistently blinded ourselves to the economic costs of the care we deliver. We routinely prescribe drugs and treatments that are marginally more effective than their predecessors but many times more expensive, using the cop out of “Hey, we’re advocating for our patients”.

    Our pathological disregard for the health of the healthcare system has led us to almost 50 million uninsured, double-digit healthcare inflation, and a Medicare Trust Fund scheduled to go bankrupt in 9 years. The end result will be that those tasked with funding the healthcare system will be forced to make draconian decisions that could have been mitigated or avoided outright had we exercised just an iota of financial stewardship.

    Physicians need to remove their blinders and recognize that there is no magic healthcare money fairy. That means that we need to start advocating for sane, evidence-based rationing, like they do EVERYWHERE ELSE. Time for us to grow up.

  2. Brad F March 12, 2008 at 11:42 am #

    Bob
    I truly admire your guts. This post really was a breath of fresh air, and deals with a subject I think about quite often. As Eric points out so eloquently, it is a balancing act between costs (5% of Mcare beneficiaries die each year and use 28% of resources) vs the sometimes benign motivations of families driving decisions.

    When asked by loved ones to prolong care secondary to guilt or finances, drawing a line in the sand may be easier. However, when religious, cultural, or “sophistication” issues are in play, the decisions are not so easy, as we all know.

    I don’t know if I could do what you do, despite my knowledge of the impact these types of cases have on the health care system. I say that knowing that my refusal to participate in their care on philosophical grounds would lead to a call to the patient rep, who in turn, would call my superiors, who in turn would call one of my co-hospitalists. My colleague would get a request to step in, and I would make a happy, smiley friend for the day (or week). By definition, these patients wont go to private or voluntary staff as we all know.

    We all talk about waste. We do need posts like this to build some inertia. Without a culture shift whereby docs can say, “this is acceptable behavior,” we wont change this kind of practice. However, society and the legal system must be on board as well. That is the tough part, and why we also need champions in the lay public to educate the average citizen on this difficult subject. Until then, many docs wills be very fearful in saying no due to lack of clear ethical protection, ie, “CMO, VPMA, etc., says this is OK.” Even though we can do it, like you do, this is a big leap and docs want to feel that there is some standard of care supporting this practice.

    brad

  3. watchley March 12, 2008 at 4:39 pm #

    Bob,
    As usual you are right on the mark. Eric and Brad also make some very good points. I have struggled with this issue now for 22 years in practice and have some practical observations. It is truly a cultural viewpoint either by region,religion or heritage. Until our society start having meaningful discussion I don’t know if we can make progress. I live in a world very similar to Brad where if I did something similar to what you did I would have the patient rep on the case. Calling Ethic Consults along with Palliative Care Consults seem only to inflame families behavior. Even having the pastors of their churches to come in sometime will not help. I sometimes wonder if families want prolonged care because of not being a good child,spouse or relative. I have the discussion with evry patient I admit and I am amazed that some of the 80 and 90 y.o. have never even given it a thought. And then we have the PCP who haven’t had this conversation either ! Some day I know it will be better but for now I do the best I can.
    Bill Atchley

  4. chris johnson March 12, 2008 at 6:47 pm #

    I’ve been doing pediatric critical care for several decades now, long enough to see the old medical paternalism morph into the view that the patient (or for my patients, the parents) should make all decisions. My own practice now is a lot like Bob’s: I will do my best not to violate the ethical principle of autonomy, but autonomy does not encompass a parent’s right to compel me to act unethically. Futile care is unethical, and I think Bob’s definition of futility is a good working one. When circumstances require, that is the framing of the discussion I have with parents. I have only met a complete impasse with families a couple of times in nearly thirty years of doing this. Only one of those cases required legal intervention, in large part because the case likely involved a case of child abuse; in the others we eventually reached understanding and an agreement.

    I think one thing that helps in pediatric practice is the completely open family visiting hours in PICUs–parents come and go as they like, whenever they like, which makes them more likely to trust us, I think. These days we allow parents to stay when we do everything from intubations to central lines to CPR, and I think that helps build trust as well by showing we’re not hiding anything.

    The fourth principle of medical ethics, justice, means to me, among other things, that it is unjust to all society’s children to squander our limited resources on futile care.

    Bottom line: when parents have wanted me to behave unethically by offering futile care, I have replied that I won’t do it, but would try to find them another doctor who would if they like. Thus far I’ve never had to do that.

  5. William March 13, 2008 at 3:26 pm #

    Where was the utilization of the Social Worker , Patient Counselor or Healthcare Chaplain in all of this?

  6. Lee Kheng Hock March 17, 2008 at 3:47 am #

    Hi Bob
    You are a brave man. Many of us struggle with this but chose to remain silent and let the rules of system carry on even though we know it prolongs the suffering of our patients.

    It is interesting that both your patients are elderly Asians and presumably have families that are still rooted in traditional Asian culture. Studies have shown that Asian culture are more likely to accept a paternalistic approach in clinical decision making.

    From my personal experience, practicing in an Asian society, I notice that clinical decisions are often taken at the family level even when patients are fully capable of making decisions themselves. In the more traditional family, the eldest male member of the family may have a stronger say. When there is no clear decision in the family, the default is usually to go for the “do everything possible” option. As with doctors, most family members will avoid being the person who advocate termination of care for fear of being blamed by other family members, sometimes even distant relatives who are not present to make the decision. It is the same dynamics of group decision making. Nobody wants to play the bad cop.

    Families sometimes expect the doctor to be paternalistic or at least come out advocating clear options. So perhaps it is not surprising that the family accepted your decison quite well. Perhaps they may even be relieved that someone had help them make the difficult decision.

    ICU beds are a precious resource and whether we like it or not, rationing is in practice. Avoiding the painful truth that prioritization and rationing takes place just makes a mess of the situation and is not in the interest of our patients.

  7. COS 101 March 21, 2008 at 7:54 pm #

    Agree with your actions. Over time, I have come to learn that patients, families and physicians do not share the same definition of “do everything”. Often when the family asks the physician to “do everything”, they mean please do not let the patient die alone, do not make me decide, or do not let the dying patient have pain. Their definition may be colored by factors such as their cultural backgrounds, experience with the patient, a perception of the patient’s wishes, and their emotions of the past and present.
    For the physician, “do everything” elicits a popup menu of technical options that are too often presented to a family struggling with panic, fear, desperation or perhaps guilt. How often have I heard the physician present a menu of therapeutic options in these situations, much like a waiter taking an order at a restaurant, only to arrive at an irrational plan of care like “provide chest compressions and drugs but do not intubate” or “shock but no intubation or chest compressions”? The irrational plan reveals that the physician has effectively loaned his or her medical license to a grieving family.
    When asked to “do everything”, perhaps we physicians should reply, “I will do everything reasonable and I can assure you that our care team will keep your loved one comfortable,” and not even broach ACLS or other advanced therapy that won’t improve outcome. Don’t discuss, much less offer, therapy that won’t work; it’s a false promise presented to a grieving, frightened, family.
    Congruent with what Lee Kheng Hock said above, perhaps you mercifully lifted the burden of a difficult decision from the family who felt the duty to demand “everything” to prove that they tried their utmost.

  8. The Lenster April 11, 2008 at 5:01 pm #

    Bob, I have to say that I agree with you 100% on this issue. I like how you took a stand and the idea of it being possible to “just say No” to torturing patients.

    Families have a tough time with these issues: I have spent a lot of time teasing out family’s motives whether based on guilt, grief, anger, or a genuine belief in what their loved one would have wanted.
    Story: at my hospital, I assumed the care of a (details changed) 90 year old Caucasian man who had undergone a colectomy a few days before. The patient was severely demented, all his family members were deceased, and he had no POA. He resided in a group home. He was admitted with severe constipation and his colon then perforated from the hard stool. After consulting ethics committee and others, it was determined that he should have the surgery, although a friend/caregiver of the patient stated that he would not have wanted aggressive treatments. I questioned the surgeon’s decision to proceed with surgery under these circumstances. The surgeon, young, very competent and a good guy, defended doing the surgery (it was indicated, no family to decide otherwise), but I could plainly see the patient suffering. I was frankly horrified, and I thought to myself, that morally I couldn’t justify, if I were the surgeon, torturing someone who was basically nonverbal. I would have said, “No”, or at least, “Not me.”

    My heart-felt opinion: we owe it to ourselves and to our patients to advocate for them in the case where we are at least 98% sure that treatment is futile and will cause more harm. Whether or not the patient rep is called, or our colleague is mad at us because they have to take over the case with a challenging family dynamic, is completely irrelevant.

    It is important to just say, “No, I won’t do it.” And, as in the cases you mention, I do feel many times the family will not contest the decision and will be relieved.

    Also, I wonder, when the avian flu pandemic hits and there are no open ICU beds anywhere and ventilators are in short supply, how our DNR and ethics culture will change. I suspect it will change very rapidly.

  9. etrain April 17, 2008 at 3:51 pm #

    I think I will take the poitically incorrect stance of saying that Bob actually is not perfect. In fact I would say that on the topic, he should be ashamed that he has taken up so many years to figure out that CPR is a futile endeavor for the elderly with serious comorbidities such as dementia and cancer.

    As a physician and hospitalist, I always treat my patients in the same manner that I would want a physician to treat my family. Bob, would you want your parents in Boca to be flogged in the ICU by a team of hospitalists that knew there was really no chance of survival? Wouldn’t you want the doctors taking care of your mom to have some guts and tell the truth about the fact that the patient will not survive the CPR let alone the ICU stay?

    I may not be the smartest physician, but over the years I have developed a skill most docs never obtain. I can quite easily sit down with a patient and family to discuss the future and how different treatment options will affect their quality of life. Then I make a reccomendation based on my knowledge, experience and humanity.

    Any hospitalist right out of residency can keep a human body alive from a physiologic standpoint, but only a “good and caring” physician can look at a person and that person’s family and then make a recomendation about a dignified end of life strategy. I am dissapointed Bob, that you are only now starting to become a good and caring physician in regards to end of life care.

  10. mcb April 22, 2008 at 4:04 am #

    I also have gotten more paternalistic. You are absolutely correct that what we are doing is absurd. CPR should not be offered to everyone even if they (or much more commonly their family) want it. I’m not even sure it was developed to deal with every single death in the hospital (which is what we seem to be using it for, most of the time.) It’s just not appropriate. There was a letter in the NEJM in response to the article about time to defibrillation that suggested that perhaps the trouble is that we are recuscitating too many people and I happen to agree.

    As a hospitalist, though, I am meeting patients and families for the first time and it is difficult to have a good discussion about code status in the ER when I’m admitting. I do try to plant seeds eg “it’s reasonable to focus on quality rather than quantity of life” and “this may prolong death rather than extend life.” I also call it an “attempt” to recuscitate and emphasize that it may not work.

    I think that if we can communicate that there is a downside, that a code can hurt, that may help. And yes, sometimes it may be appropriate for us to say what we won’t do.

  11. etrain April 29, 2008 at 8:44 pm #

    End of life discussions are like rectal exams, none of the doctors really want to do it, but it has to be done sometimes. Even with a strange new patient in the ED.

  12. sml May 29, 2008 at 7:58 pm #

    As I read Bob’s comments and the responses, I kept thinking a similar situation must have confronted Hippocrates more than 2000 years ago. “Primum non nocere” (“first, do no harm”) most eloquently summarizes Bob’s decision and I applaud. Today we are continually challenged by rules and opinions drafted by experts in science or law, but non-physicians rarely understand, “… that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.” Only when physicians use the “art” to temper the legal and scientific, do our patients receive the fullest benefit. Excess utilization and limited resources are great challenges, and I believe keeping focus on the “art” will simplify the solutions we create. “I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism,” may still provide workable approaches to helathcare challenges today.

  13. jbird May 29, 2008 at 8:32 pm #

    I agree with Bob’s comments completely. At the end of the day I have to be able to sleep at night, thus there is no way I would ever code any of these patients. So my options are to go the “slow code” route or to be honest with everyone involved and just tell them I am not going to code them. I’m not going to ever do a slow code so that just leaves honesty. I feel, given this logic, that this should not even be controversial, and the fact that it is leads me to wonder if we are educating residents well at all in this field. Perhaps we should acknowledge that “problem families” are not the only ones at fault here and that many hospitalists could do a better job in this area. I also think it would be beneficial to have some established/formal education in this area for all hospitalists. It certainly is one of the most difficult aspects of my job and we get basically no formal training. Fortunately I have a strong background in ethics and feel comfortable with these issues, but I find that most of my colleagues are not and do not even know the basics rights which they, as a physician, have. The central issue is that physicians struggle doing something they think is not indicated, simply because families want them to. My answer is to never do anything which I think is not indicated. I agree completely that there is a place for paternalism (though that’s now a dirty word). We cannot ask families to routinely make such complex decisions and to do so places an undue burden on them and disrupts the dying process.

  14. cob June 3, 2008 at 11:39 pm #

    While I support the principles espoused here, I think ‘agism’ is rearing its ugly head. I am both a health professional and family member of an 85 year old who was in a precarious state, treated aggressively for at least 6 weeks, who was fearful of death and at the same time felt that he would rather have been ‘let go’ than suffer aggressive treatment, and who has miraculously enjoyed a few more years of good living and had time, along with his wife, to prepare peacefully for acceptance of death when it does come. An essential component of a compassionate decision in a time of crisis is to enable both the individual and intimate family or friends to view death as freedom – whatever their age; the DNR decision should never be based on resource rationing.

  15. Bob Mooney June 6, 2008 at 4:55 pm #

    Exceptionally well put. One point you made that I would expound upon is the issue of to what degree physicians are responsible for observing the interests of society (ie. the cost angle) when that consideration collides with the wishes of the patient or their family. Levinsky’s argument has merit when the patient is paying their own way, or in the setting of infinite resources. In the setting of limited resources, and when the group is footing the bill, the interests of the group (ie. society) absolutely warrant consideration when a physician is crunching the logic of whether to advocate for, or to discourage the rendering of heroic treatment measures.

    As you suggest, the resources that are being expended on the terminally ill nonagenarian are necessarily being denied to the uninsured 45 year old sitting at home having his MI because he can’t afford the visit to the ER. A culture needs to be developed that permits and encourages physicians to take resource utilization into account when mulling over our approaches to interacting with patients and with their families when navigating the realm of futile care.

    A final observation is that physicians must become more assertive in the futile treatment setting when confronted by insistence on aggressive management. Families, when challenged on the point, will back down at times from the “do everything” stance when presented with a firm argument that 1) it is reasonable not to do everything, and 2) “doing everything” can actually be an act of cruelty. As you note, such an exchange relieves the family of the burden of having made the determination. It is up to the physician to step up and to have such a discussion with the family and i think that we are often reluctant to “go there” with a family in this manner.

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