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by Rebecca Omlor (@BeccaOm15)

The code bell goes off overhead calling for a rapid attempt to try to bring a patient back to life. Who is on the receiving end? Is it a frail older adult with dementia, a patient with multiple medical problems, or an otherwise healthy adult who recently underwent a cardiac catheterization for a myocardial infarction?

If this was the scenario in 2018, a team would rush to that patient and begin cardiopulmonary resuscitation (CPR) along with advanced cardiac life support (ACLS) including the use of medications and external defibrillation, if indicated, to attempt to revive the patient. While we put all this effort in, according to data from 2003, we have a little less than a 50/50 chance of getting that person’s heart beating again, and only 17% of these patients will survive to discharge¹. There is no regard for how ill the patient is, what their pre-hospital functional ability was, or what might be the best-case scenario if they survive. If a patient states that he or she wants to be resuscitated, that is going to happen.

If this were the early 1960s, we would be looking at a very different scenario. According to the original group that published on the utilization of CPR, they had a very limited scope of when CPR was indicated.

Not all patients should have cardiopulmonary resuscitation attempted. Some evaluation should be made before proceeding. The cardiac arrest should be sudden and unexpected. The patient should not be in the terminal stages of a malignant or chronic disease, and there should be some possibility of a return to a functional existence. The rigid time limit of 3 to 5 minutes since the onset of arrest of cardiac output should not be exceeded. In regard to the latter when there is a genuine question of the duration of arrest, resuscitation should be attempted.²

In 1961, the understanding was that CPR would be used thoughtfully. It was viewed as a finite resource that would only be executed in cases where there would be known benefit. They hold to the understanding that if someone has been dead long enough to begin to develop brain injury, the benefit of CPR is significantly diminished and should not be attempted.

Today, we seem to disregard the limitations of CPR. Many people who work in healthcare can recount stories of resuscitation attempts on people who have been down longer than the 3-5 minute range only to have people remain in unresponsive states with minimal brainstem function only. We have stories about people we felt were knocking on death’s door where we tried multiple times to yank them back from the inevitable because that was their wish. We feel as if we are fighting nature, as if death is the ultimate enemy that we should somehow be able to overcome.

If we are to take the recommendations from 1961 to heart, then resuscitation should be viewed like any invasive procedure. As with surgery, if the medical team does not feel that there is meaningful benefit or that the harms outweigh the benefits, then resuscitation should not be recommended or attempted. Thoughtful discussions need to occur with patients about the ramifications and most likely outcomes, just as with any other informed consent. My hope is that more and more people will begin to realize that CPR seen on TV dramas is not reality and the potential harms that come from it can vastly outweigh the benefits in many cases.

This is the first Pallimed post by Rebecca Omlor, MD is a palliative care doctor at the Wake Forest Baptist Medical Center. She has over 500 pictures of her four fur-children on her phone and enjoys bragging about them to anyone willing to listen.

To see more Pallimed posts on resuscitation click here.

References

1. Ramenofsky DH and Weissman DE. Fast facts and concepts #179: CPR survival in the hospital setting. Palliative Care Network of Wisconsin. . Updated July 2015. Accessed August 17, 2018.

2. Jude JR, Kouwenhoven WB, Knickerbocker GG. Cardiac Arrest; Report of Application of External Cardiac Massage on 118 Patients. JAMA. 1961;178(11):1063–1070.

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“Doctor, you might have children just like anybody else. Would you want somebody to give you false hope or tell you, ‘OK, your child is gonna be fine,’ and you know she’s not?”  - Parent feedback (Meert et al)

“Barriers to resuscitation status discussions were ranked according to the percentage of physicians and nurses who identified the issues as often or always a barrier. The top 3 barriers were unrealistic parent expectations (39.1%), lack of parent readiness to have the discussions (38.8%), and differences between clinician and patient/parent understanding of the prognosis (30.4%).”  - Sanderson et al. 
I first read Shirley Jackson’s short story “People Like ThatAre the Only People Here: Canonical Babbling in Peed Onk” from her collection of short stories Birds of America* as a college freshman. At that time, nary had a thought entered my mind about a career in medicine, and I read the book during my coursework to obtain that ever so useful creative writing degree. The story was used again in a course I took later in college, and, again after I changed paths and went into medical school. It just kept showing up, and I kept reading it. The strange thing was, though, that I would forget I had read it until a few sentences in, when I would start to think, “Huh, this sounds very familiar…”

So when I sat down to write about Amy Sanderson and colleagues’ report on their findings of “Clinician perspectives regarding theDo-Not-Resuscitate order,” I knew I had read something before that would tie in with this study. It was another case of “Huh, this sounds familiar…” I knew there was another angle to this, so I dug through my file folders until I can to the one that said “Parental Perspectives” and another one labeled “Provider Perspectives.”

In one folder, articles filled with attempts at identifying the needs of parents by culling through their experiences.  Common themes present themselves: losing a child is incredibly difficult – whether that child was a 17 week fetus or a 17 year old football star; there are no ways to be prepared for the loss of a child; honest and straightforward information and compassionate communication from doctors and nurses is helpful and necessary. In short, parents what to know what is going on, and they want to be able to have the information, even when there is prognostic uncertainty, so that they can be active participants in the care of and decision making for their children.

There is another common barrier theme that arises from the studies of the providers, though. It is one that, in light of what we see from parent surveys and studies in which parents are almost begging for more information, may surprise you.

At the same time clinicians are grappling with feeling unprepared and uncertain of how to communicate, we have parents saying, “we need information from our child’s care team so that we can know what is going on, have time to process it and understand it, and be able to feel that we are helping make to most appropriate decisions for our child.” They want information given in smaller portions, in lay terms, on a regular basis.

Is anyone else getting that sinking gut feeling?

Back to the Sanderson’s study and article. Sanderson and her colleagues David Zurakowski and Joanne Wolfe wanted “to identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for pediatric patients.” Literature exists for adult populations, but this was the first specifically targeted at the pediatric realm.

Let that sit for a moment.

Perhaps the failure to have adequate communication upstream leads to consequences in care downstream when DNR orders are, as was found in Sanderson’s study, perceived to affect care beyond response to cardiopulmonary arrest.

As a parent, the idea of something medically horrible befalling one of my children is almost too much to bear. The idea that I might be left in the dark about his condition or prognosis and not have the information I need to make the best decisions for my child and our family is another layer of suffering I don’t think I could tolerate. When the unthinkable happens and a parent is kidnapped into that “cellar room” that Lorrie Moore described,  she needs to hear voices from the outside telling her what is going on throughout her time in the cellar, not just when it is about to be flooded or set ablaze. And though no one can truly get into that cellar room with her, they can open windows into it, hold a hand through it and promise not to let go.  

If we can work together, everyone will stand to benefit.

Sanderson A, Zurakowski D, and Wolfe J (2013). Clinician Perspectives Regarding the Do-Not-Resuscitate Order. JAMA Pediatrics PMID: 23979224


Other cited works:

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(A hearty welcome to Emily Riegel, MD (@emriegel) a Med/Peds physician who completed a hospice and palliative medicine fellowship a few years ago and is now at KU Medical Center helping lead pediatric palliative care in Kansas City.  Emily is a keen observer who could easily be writing the great next medical drama on TV, but until then I'm happy she is contributing to Pallimed - Sinclair)

In the March issue of Pediatrics,  Jonna D. Clark, MD, and Denise M. Dudzinski, PhD, take on the audacious task of encouraging pediatricians to step into the role of decision maker for terminally ill children and, in doing so, help alleviate the burden of  making decisions regarding CPR from the shoulders of parents. In “The Culture of Dysthanasia: Attempting CPR in Terminally Ill Children,” Clark and Dudzinski call into question the practice of requiring the “opt-out” approach to CPR, and state that this “fails to appreciate the nuances of the special parent-child relationship and the moral and emotional complexity of enlisting parents in decisions to withhold CPR from their children.” The authors then provide two tenets on which physicians ought to base this action of taking over decision making for the parents of terminally ill children.

Clark JD, and Dudzinski DM (2013). The culture of dysthanasia: attempting CPR in terminally ill children. Pediatrics, 131 (3), 572-80 PMID: 23382437 (Subscription Req'd)

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Helen Kao at Geripal recently wrote a thoughtful post which highlights some of the flaws in the California POLST form. It's worth a read and I agree with her comments.  (And even though I use "POLST" here, I agree with her thoughts on using "POST" instead.)

For jurisdictions which are considering the establishment of POLST, it is important to consider the experience of other states as new forms are designed and legislation is drafted. I live in one of the many states which is in the process of developing a program. In spite of the weaknesses of forms currently in use in other places, PO(L)ST/MO(L)ST remains a very helpful tool with new research continuing to back its utility.  For instance, consider a recent study published in the Journal of the American Geriatrics Society which demonstrated high consistency between treatments provided to nursing facility residents and orders recorded on POLST forms. The study found that overall, POLST orders were consistent with treatments provided 94% of the time. Consistency rates were especially high for resuscitation orders. Consistency rates were slightly lower for antibiotic use and much more modest for feeding tubes use. 

Reasons for inconsistencies between orders and treatments should be evaluated further.  It's unclear that improving the form itself would reduce these inconsistencies.  Patients' preferences sometimes change and sometimes patients want their surrogate to have the leeway to change orders after the patient loses capacity (perhaps using a "best interest" standard of decision-making at that time rather than a pure "substituted judgment" standard). 

I hope that my state will "get it right the first time" taking into account the experiences of others. However I know that it is impossible to get it completely right the first time. Therefore, I hope that any legislation approved will include a process for modification of the forms which does not require the wheel to be reinvented down the road.

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The Happy Hospitalist, a long time blogger and purveyor of fine absurdist humor with the creation of multiple 'animated bear' videos (aka Xtranormal videos) has created a video focused on the dying patient in the intensive care unit...but not really.  Not really in the fact the video is not patient-centered at all, and that is the point.  HH skewers the system that so readily places orders for tests, scans and procedures before even talking or touching the patient.  For anyone in hospital based palliative care I am sure there are many witnessed experiences in the self-declared hyperbole of the video.


Here is the video (link to original post):


Below are some of my favorite lines/segments because they emphasize the frustrating weaknesses of our current approach to care of the critically ill:

"His functional score is -2, which means death within minutes."
'The cardiologist who orders a stat echo, EKG Q1 hour, and a iTunes enhanced pacemaker so he can bill for music therapy.'
"'Everyone deserves to die with a normal BMP."

There are other little gems I don't want to spoil that will make sense to anyone who has worked in the hospital, and for the non health care professionals reading this post I think anyone who has had a loved one critically ill will recognize some of these absurd situations that divorce the care of the numbers from the care of the patient.  This point is highlighted in my favorite line of the video which is repeated over and over again from both the hospitalist and the ICU nurse:

Listen all the way to the end to get a sense of what HH really thinks about palliative care in the hospital.  He has been a big supporter of palliative care and he gets the fact that palliative care should be far upstream from just dying patients in the ICU.  For examples see some of his other posts:
Barriers to Palliative and Hospice Care: Denied by the Nursing Home
End of Life Care Discussion Should Occur Before Death
The Power of Love: Going to Dialysis Hell and Back

Leave your thoughts here but also go to Happy Hospitalist's blog and leave comments there because it is pretty popular and our thoughts might get to people outside our normal blogging circles

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"Frame" sculpture near Strongstry, England (photo by Liz Dawson) /  CC BY-SA 2.0

Consider a case:  A 60 year-old man is admitted to the hospital with failure to thrive secondary to metastatic cancer.  The physician who admits him asks the question out of the blue, "If your heart stops or you stop breathing, would you want us to attempt to resuscitate you?"  How many times is this exact conversation taking place right now and what do you think the answer usually is?  (The phony stat: "One out of every x minutes, a doctor conducts a code status discussion in a manner that may lead to a decision which is unlikely to help the patient achieve their goals of care.")

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The New England Journal of Medicine reports an epidemiologic study of in-hospital CPR in older patients (65 years of age and older). The study identified over 430,000 Medicare beneficiaries who underwent in-hospital CPR between 1992-2005 to answer the question of whether survival rates of in-hospital CPR have improved over that time. They also attempt to determine which patient and hospital characteristics might predict survival.

The rate of survival after CPR hasn't changed much in the time period examined with 18.3% of all CPR recipients surviving to hospital discharge (similar to other studies). Lower survival was significantly associated with male gender (OR 0.97), age (with progressive decline in survival as patients age), Deyo-Charlson score of chronic disease burden, admission from a skilled nursing facility (OR 0.60), and race (black OR of 0.70 and other non-white races OR of 0.85).

Non-metropolitan hospitals had better survival rates, perhaps because sicker patients were referred to metropolitan facilities before they required CPR. Neither the number of hospital beds nor teaching hospital status seemed to make a difference in survival.

Overall, there were 2.73 CPR events per every 1000 admissions. This increased slightly over the period of time investigated (a timeframe which also coincides with the introduction of hospital based palliative care in the United States). Over time, the number of hospital deaths that were preceded by CPR increased from 3.9% in 1992 to 5.2% in 2005.

Neither neurologic outcomes nor quality of life data were reported for survivors. I wonder if it's possible to use rough surrogates for these outcomes such as the ICD-9 code for anoxic brain injury and CPT codes for PEG tube and tracheostomy, but that wasn't done. Furthermore, it would helpful to have 6 month or one year mortality data. The study is already chock full of all sorts of data, so perhaps I'm asking for too much or maybe some of this data will be released later.

Over time, fewer patients are being discharged home after CPR with more going to another hospital (long term acute care hospitals, likely), SNFs, or inpatient hospice. As the authors note, rather than necessarily representing poorer outcomes, this likely represents the fact that patients are being discharged quicker and sicker to other places besides home, although they don't report the hospital length of stay for patients in 1992 vs. 2005.

Some thoughts on the various factors examined:

1. Age: The percentage of patients receiving CPR increased from 14.6% in the 65-69 year old group to 22.6% in the 75-79 year old group and then decreased to 7.9% in the nonagenarian group. Survival to discharge in those three groups was 22%, 19%, and 12% respectively. The 12% survival rate in the nonagenarian group seems amazing but likely represents a selection bias, as one could envision the 8% in this group who underwent CPR being the most robust physiologically for their age group.


2. Patients Admitted from Skilled Nursing Facility: While this only represented 2.5% of patients, this is a major risk factor for mortality after CPR. Any patient that returns from a skilled nursing facility to the hospital should have a full exploration of their goals of care, regardless of code status. I wonder how these dismal outcomes compare to being admitted from an intermediate care facility in this population, but alas Medicare doesn't pay for that, so probably doesn't track it.


3. Chronic Disease Burden (using Deyo-Charlson score): Between a score of 0,1, and 2, survival to hospital discharge didn't vary much (around 19% in each group), but then for those with a score greater than 3 it went down to 16.1%. The greater than 3 crowd is probably quite heterogeneous in their survival rate, and it would be curious to parse this out a bit more.


4. Race: In this study, blacks survived to hospital discharge 14.3 % of the time compared to 15.9% of other non-whites and 19.2% of whites. Of hospital deaths amongst black patients, 6.6% were preceded by episode of CPR compared to 3.9% of white patients and this incidence has increased significantly since 1992. In the multivariate analysis, they adjusted for hospital location where blacks were more likely to be admitted and this only improved survival slightly. The authors suggest several possibilities for the lower survival in blacks and other non-whites, including concern about quality of care before, during, and after CPR. They cite research which suggests resuscitation and defibrillation might be delayed in blacks leading to a more malignant rhythm at time of CPR. It's also known that blacks are less likely to elect a DNR order, and they suggest this may play a role. Another disparity factor that was not mentioned in their discussion could be the lower rates of end-of-life discussions occuring between black patients and their healthcare providers (as evidenced by a recent study from JAGS in a nursing facility setting).

The authors lament the lack of improvement in CPR outcomes over time and wonder whether it's because we haven't gotten any better at ACLS in the hospital or if we really have but there's a confounder present that makes it look like we haven't. They ponder whether the nature of acute illness has changed towards illnesses that respond less favorably to CPR. Other confounders could include an increase in age and chronic comorbidity level amongst those receiving CPR, but the change in these over time was not reported.

The authors reach one conclusion that will be no surprise to most Pallimed readers:

Of significant concern is our finding that the proportion of patients who died in the hospital after having previously undergone in-hospital CPR has increased during a time of more education and awareness about the limits of CPR in patients with advanced chronic illness and life-threatening acute disease.

As Drew has noted here and here, we still have a long way to go in educating people about CPR and outcomes.

In 1992, the 65-90 year old population was born between 1902 and 1927 whereas in 2005, this cohort was born between 1915 and 1940. There could be a cohort effect going on here, as well, as the earlier cohort was all born well before doctors could routinely save lives with wonder drugs like penicillin, whereas those born in the 1930's were mere babes when the first case report of a penicillin pulling someone back from the brink was published. (Drew pondered the possibility of this type of cohort effect in Ireland as described here.)

Perhaps the advent of hospital based palliative care in the United States has artificially suppressed an increase in non-beneficial CPR in American hospitals? Hard to say- unless you do an analysis of hospitals who had palliative care teams for most of the timeframe vs. those that don't have them to see if the same trends are present (although, once again, one could anticipate many confounders). If not, we can still hope to stem the tide in the future.

Since some elderly patients DO survive CPR with good neurologic outcomes, I'll continue to hope for more research that helps identify those that will benefit most from it so that we can be more selective in our application of resuscitation measures. And it's probably appropriate that a certain percentage of deaths are preceded by unsuccessful CPR, but is 5.2% the right number? Unless we can come up with some new-fangled bedside instant analyzer that tells us prognosis right before we start compressions, it will remain a crapshoot and we can just hope to avoid CPR in those patients where CPR is certain not to meet their goals.

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Journal of Medical Ethics has an article about hospitalized patients' understanding of and attitudes towards code status discussions (see also this blog post about a similar study). The study involved interviewing ~140 newly hospitalized patients (median age 48 years, 92% white, over 80% had were expected to live more than 2 years according to their treating physician) about their understanding of and attitudes toward CPR, code status orders, etc. Among other things they were asked what they thought the survival was for in-hospital arrests; they were then told it was about 15% survival to discharge and were asked if that changed their preferences for wanting CPR, etc.

Patients had very poor understanding of CPR and its outcomes. About 30% of patients recalled having a discussion about code status during the hospitalization. Most patients noted that they thought they knew what CPR meant and entailed. 68% knew it meant chest compressions however only 27% knew it could involve defibrillation and only 7% mechanical ventilation. About 90% of patients (including the oldest group) said they would want all 3 (of note when they describe the situation they describe it as one in which 'you are dying').

Overall patients estimated survival to discharge after an in-hospital arrest to be 60%. After being told actual expected survival is about 15%, 9 patients said they were less interested in CPR. After being told expected survival to discharge with 'good brain function' was about 7%, 25 patients said they were less interested in receiving CPR.

8% of patients had code statuses which did not reflect their stated preferences; 2/3 of whom were 'full code' and didn't want to be. They noted that over 80% of patients said they thought it was good to talk about CPR outcomes. Only a few percent said talking about CPR made them uncomfortable. About a quarter of patients said they had living wills/advance directives; less than 5% of patients had them in their chart.

While they did collect data about physician estimation of prognosis, they do not mention if they compared that with patient preferences or anything else.

This is another solid reminder of how little patients actually understand about CPR - both its 'methods' and outcomes, and that we should take nothing for granted when discussing it. It also indicates that discussion of outcomes does change some patients minds, although a relatively small percent overall (fewer than this landmark study, although that one involved a much older patient population, and asked questions in the context of a patient's long-term survival as well). The fact that these were young and relatively 'healthy' patients probably is what leads to these results, especially compared to the older study: if you are 48 years old, expecting another 20-40 years of life, a 15% chance sounds pretty good. If you have a progressive, life-limiting disease, with a short overall survival (e.g. likely less than a year) the benefit:burden profile looks much different (aside from the reality that in those patients 15% is probably a generous figure).

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1)
WBUR (a Boston public radio station) has produced and broadcast a multipart documentary on end of life care in the US (Quality of Death: End of Life Care in America - Inside Out), with a major focus on palliative care, and balancing life-extension with quality of life and cost. It lays these issues bare, and even talks about research into providing palliative care specialist services early in the course of a disease. One of the segments actually involves a patient talking about how grateful he was for a palliative doc to talk with him frankly about dying instead of continuing the cheerleading. Wow. And it talks about how frank discussions are important for improving end of life care, as opposed to advance directive documents. Wow Wow.

(You can listen online; it's a little tough to find - go to the bottom of the page and click on 'listen' - it's small text towards the bottom.)

Thanks to Dr. Suzana Makowski for alerting me to this.

2)
BMJ has two editorials debating whether hospice facilities in the UK should be exempt or not from blanket NHS guidelines on cardiopulmonary resuscitation (yes exempt; no not exempt). Much of the discussion is about specific details of the NHS guidelines, and the structure of hospice care is different in the UK than in the US of course (ie many of these patients would not be considered 'hospice' patients per se in the US model), but it's interesting reading nonetheless. Both editorials are written by palliative care clinicians; this is a debate internal to the palliative care community. The Yes folks' major argument is with the national guidelines which create an opt-out system: resuscitation should be attempted unless patients opt-out. They argue that for hospices it should be an opt-in system. The not exempt folks basically argue this: hospice care is supposed to be state of the art medical care and by claiming exclusivity hospices are distancing themselves too much from mainstream medicine. Basically it's an argument that the movement has been claiming that it should be part of routine, mainstream healthcare and it's not a time to begin claiming exclusivity, particularly given now that palliative care settings are now seeing patients earlier on in their illnesses.

They also note that the guidelines say that if there is no realistic prospect of success then CPR shouldn't even be attempted. While we don't have national guidelines in the US, that is in fact a professional standard** here yet we all know that it is routinely ignored and very few people feel comfortable making a decision unilaterally at the time of an arrest if a patient has no prior do not resuscitate order. I can't imagine it's much different in the UK.

Anyway - I'm curious as to what those of you who work in hospice facility settings think of this, and what your facility standards are, and how much of a real-life issue this is (or not) - responding to requests for CPR in otherwise dying patients in hospice facilities.

**I'm ignoring New York state, the VA system, and local institutions and more talking about the broad professional-ethical consensus that physicians have the right to decline to provide medical care/interventions they judge as having no realistic therapeutic benefit for a patient whether it's an aortic valve replacement, chemotherapy, or CPR.

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...is the snappy title of a recent publication on public perception of resuscitation outcomes in Resuscitation. The data come from a survey of ~1800 people administered in Ohio & Pennsylvania in a 'variety of community settings' (airports, bus stations, and clinic waiting rooms). They don't give any further details as to how these people were found/screened; that said, there does not appear to be even an attempt to get at a random cross section of a population.

Median age of the subjects was 40 years, 55% were female, 17% African American, and 72% had education beyond high school (more than the US average). Respondents' mean estimate of survival with good outcomes (returned to the life the arrestee had before) from cardiac arrest (they asked about both in-community arrests and in-hospital ones) was 50%. As in 5-0. Not 1-5, which is a generous figure for this outcome (and actually is the approximate chance of survival-to-discharge after an in-hospital arrest; survival to baseline status is worse although less well defined in the literature; survival of an out-of hospital arrest is much lower).

They also inquired about decision-making about when to do CPR; 87% rated patient preference as important & only 54% rated physician prediction of outcome as important. To an extent, those who had more realistic expectations for resuscitation outcomes were less likely to endorse wanting it.

The most curious findings were about what resuscitation procedures subjects would be willing to undergo. Of those who said they themselves would want efforts to 'restart their heart' if they had an arrest, they went on to list (in lay-terminology) certain common aspects of CPR and asked them if having that done to them would be 'acceptable.' Many subjects then actually went on to say they wouldn't want these things: only 74% said they'd want chest compressions, 61% shocks, 54% IV medications, 48% endotracheal intubation, 42% mechanical ventilation, 31% a central line.

This, to me, is where the SciFi aspects of the paper really come out. It's no shock lay people don't understand likely outcomes of resuscitation - what's surprising to me is that these people then rejected in large numbers routine aspects of resuscitation, which makes one wonder just what the subjects thought resuscitation entailed. The phrasing in the questionnaire talks about arrests, and about 'restarting the heart;' most subjects generally thought this was a good idea, especially for themselves. But when asked if this happened to them, if they'd take a 'large IV in their groin or neck' 70% say that wouldn't be acceptable to them?

Given that just a little over a half of the subjects thought physician prediction of outcome was important for resuscitation decision making, then a good half of the subjects went about saying they wouldn't want endotracheal intubation, I'm reading this wondering if I've been thinking about 'code status' discussion incorrectly all these years. I've always thought the much-practiced 'gory description' approach in discussion CPR was misguided (e.g. 'we pound on your chest, break your ribs, stick this pipe down your throat, hook you up to a breathing machine, and stick central lines in you wherever we can find a big vein). Instead, the fundamental question is one of outcomes: if such procedures would restore someone to their previous state of health in a timely fashion then, well, who should care about the details - it's better than death (assuming the previous state of health was good/acceptable). Of course, it usually doesn't, and hardly ever does for otherwise dying patients, which is the whole point of not doing it in those situations, with the 'gory' details being just that (details). Thus, the main goal in having these discussions (at least in otherwise dying/poor prognosis patients), is to disclose the outcomes (and recommend alternative plans).

These data would suggest otherwise: screw the outcomes, focus on the gore, and people are going to say 'No thanks!'

Despite these data, I have a hard time believing that is actually a good idea. Ignoring the issues around subject selection (not random, not representative of any population, geographically limited)...and I think we can ignore them because it is likely that a truly random sample would have found generally similar figures...I wonder if one of the phenomena going on here is one to do with the youth and healthiness of the subjects. You get the sense that these people are saying "Sure restarting the heart is a good idea. Why wouldn't it be? I'd want my heart restarted if it stopped in the ER! Who wouldn't? Stick a tube down my throat? I don't know about that. That doesn't sound fun - no thanks."

In real-life, as we sit at the bedside of ill, suffering patients, afraid of death which they know is approaching, desperate for any way out - a femoral line or a little 'cardiac massage' can seem like a small price to pay to forestall death a while. For these patients, it's the unfortunate reality that we can't forestall death in that way (resuscitation) that is the 'message' that counts - that matters for 'decision-making.' That said, maybe I should not dismiss more detailed descriptions of what is actually involved (what I've glibly referred to above as the 'gore') as unimportant/unhelpful.

I'm curious as to how detailed, or even how frankly gory, others approach these conversations (ones in which the patient is dying, and your clear recommendation is not to attempt resuscitation due to dismal outcomes)?


MARCO, C., & LARKIN, G. (2008). Cardiopulmonary resuscitation: Knowledge and opinions among the U.S. general public - State of the science-fiction Resuscitation, 79 (3), 490-498 DOI: 10.1016/j.resuscitation.2008.07.013

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Age & Aging has a fascinating research paper on changing attitudes towards CPR in older patients in Ireland over 15 years. This study is a follow up to one done 15 years ago in the early 1990s which evaluated attitudes towards CPR in hospitalized but stable, older (over 65 years) patients who were approaching discharge (delirious, demented, and - curiously - depressed patients were excluded). The 1990s study was in a single hospital in Dublin; the current one, which deliberately used similar methods, was done in a couple hospitals in Galway, and involved 150 patients. Patients were read a description of CPR and then asked if they'd want it if they arrested in certain clinical scenarios (severe physical disability, severe dementia, terminal illness with a prognosis less than 6 months, critical illness with uncertain short term prognosis).

What was not disclosed to the patients, as far as I can tell from the paper, were likely outcomes of CPR. This strikes me as the most important bit of information in CPR decision-making, but who am I to say that? Anyway - the results between 1990s and today were dramatically different to the point of being shocking. The percent of patients wanting CPR in all clinically scenarios was dramatically increased in the contemporary cohort than the 1990s one. For instance - 74% said no to CPR in their current health state in 1990s vs. 6% today; for terminal illness - 96% vs 31%; for severe dementia 100% vs. 41%. There were some other findings and subanalyses (older patients in both cohorts were more likely to refuse CPR; many more 2000s patients thought doctors should discuss CPR with patients; most patients in both cohorts thought doctors should unilaterally be able to 'withhold' CPR in patients with poor prognoses).

Looking at the numbers, what's surprising to me is not so much the percentages of patients in the 2000s who didn't want CPR but it's the very low fraction of the 1990s cohort who didn't: 74% of those in their current state of health? Either a seismic shift has occurred in Ireland or something deeply flawed (research-wise) was occurring then. The authors opinion is that, in fact, a seismic shift has occurred in Ireland which explains the results. Interestingly they note that Ireland is generally wealthier than it was in the early 1990s (this study predates the current Global Economic Collapse of course) and wonder if that has anything to do with it (interesting because in the US increased wealth, or at least education which tends to track with wealth, is generally associated with relatively less interest in 'aggressive' end of life cares).

In addition they actually throw out that TV may be implicated as medical dramas have apparently become very popular in Ireland and they wonder if that has inflated patient expectations for CPR!

I would be personally very interested to see two things in follow up to this, although I know I won't. First is a similar study with a US/North American population to see if a similar trend has occurred although I doubt there was ever a US study which showed anything similar to the 1990s findings. Second would be to take the same group of patients and re-ask them the questions after being given survival-to-discharge data for in-hospital arrests - that would at least give us some semblance of what these patients would say when 'truly' (or at least 'more truly') informed...not that many real-life patients are given that information when having 'code status' discussions.

(Thanks to Dr. Robert Arnold for alerting me to this.)

Cotter, P., Simon, M., Quinn, C., & O'Keeffe, S. (2008). Changing attitudes to cardiopulmonary resuscitation in older people: a 15-year follow-up study Age and Ageing, 38 (2), 200-205 DOI: 10.1093/ageing/afn291

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December's Journal of Pain and Symptom Management has a piece examining concordance between patients' and surrogates' understanding of end of life wishes. This is a large study for the field, involving 92 hospice patients and their surrogates (mostly spouses/partners or adult children). Both were asked extensive questions regarding end of life wishes (goals, hopes, concerns, priorities, etc). Agreement between patients and their surrogates was generally poor; among other findings most surrogates misidentified most patients' top priorities.

These are the general findings, but I'll warn you that this study generated mounds of data & one really begins to wonder how best to interpret them. I'll elaborate with a little research methods/epistemology detour. 31 end of life 'preferences' were measured for the study (everything from 'pain under control,' to 'time [spent] with pets,' to avoiding 'ventilator/dialysis to prolong life.'). If the fundamental question being asked is 'how good are surrogates at knowing patients' end of life wishes?,' how does one go about interpreting the data generated from these 30 questions? Is 50% concordance between answers to the survey "good"? 75%? 90%? Who decides? How do we decide if 90% vs, say, 50% concordance between surrogates and patients is a meaningful difference upon which we should act to improve the quality of of end of life care? And does it make sense to weigh all preferences equally? Is 'time with pets' equally necessary to "good" concordance between surrogate & patient as "say goodbye to loved ones?" Probably not. That is why the authors looked at agreement between what patients and surrogates viewed as top priorities.

I am not pointing this out to criticize the study; in fact the authors are quite upfront about these problems in the paper, and there's not like there's some standard out there they can turn to. What I do think is tough to justify 'scientifically' though is that the authors decided to define concordance as agreement within 1 point of 0-10 scale (in the survey the participants rated how important they thought something was on a 0-10 scale). So if someone rated 'dying in place of one's choice' as a 9/10 in importance but their spouse rated it a 7/10 the spouse's response was considered not in agreement. This seems arbitrary and tough to justify. Obviously the authors needed to pick a cut-off somewhere, but their findings would have been even more compelling if they showed their findings were valid even using different cut-offs.

Nevertheless the overall mediocre concordance between patient and surrogate throughout the study was so consistent that the 'big message' from the study resonates loud and clear: don't assume surrogates understand patients' wishes. As a bright note, however, the authors found that concordance between patients' and surrogates' answers was significantly improved if 1) the patient thought the surrogate actually knew their preferences, and 2) the patient reported talking with surrogates about treatment preferences. Seems obvious, but in fact this is not necessarily so given that all the rest of the study's findings demonstrate people don't understand loved ones' wishes as well as they probably think they do. So it's encouraging that we actually have some evidence to say if people actually talk about this, understanding is improved. The other 'big message' then is a reminder to us clinicians to facilitate these discussions.

(There's also an article looking at a Taiwanese population, finding that families' end of life preferences for patients are usually more 'aggressive' than the patients' own wishes.)

New PC-FACS are out. My prior comments stand: superb, wish they were free to all.

I'll be blogging about a couple other pieces of Decembers JPSM later this week.