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by Drew Rosielle (@drosielle)

Annals of Internal Medicine has published a fascinating trial of a web-based surrogate decision-making tool aimed at improving decisions for patients receiving prolonged mechanical ventilation in an ICU.

It's one of the most fascinating trials I've read in a long time, and also somewhat of a monster (in size/scope of data presented) - there are 4, lengthy online supplements attached to it (!), which is daunting, and so I'm mostly just going to write here about what I find most interesting about it.

Which is that I think this may be the trial which should convince us all that what's 'wrong' with ICU decision-making is not a lack of sharing good information -- what is wrong is our entire approach to surrogate decision making.

First the trial, briefly summarized. This was a randomized trial of a personalized, web-based decision aid for surrogate decision makers of patients with prolonged mechanical ventilation. It took place in several ( mostly academic medical center) ICUs in the US. The subjects were primary or secondary surrogates of actual ICU patients (~280 patients in total), all of whom had been mechanically ventilated for 10 days at least, and weren’t anticipated to be immediately extubatable.

The main intervention was that the surrogates received and were asked to interact with a personalized, web-based decision aid tool, which is a fascinating thing that I hope to be able to see in action one day (they have many screen shots in the supplement, but because the tool is connected to real patients there’s no way to access it publicly)

The tool involves giving the surrogates prognostic information about their loved one (based on a prognostic model) which gave an estimation of their loved one’s chance of 1 year survival; educational information about prolonged ventilation, the role of surrogates, and different care goals (eg life prolongation at any cost, maximizing comfort regardless of longevity, etc), and asked the surrogates questions about the patient’s values/preferences. Then the aid presented to the surrogate a ‘goals of care recommendation’, based on those reported values/preferences. The surrogates had an opportunity to disagree with what was presented, and indicate what they thought the actual care goals should be.

(If you’re curious, the prognostic model was probably pretty accurate. The model predicted 1 year survival for all subjects on average to be ~50%, and the actual 6 month mortality--that’s as far out as they have data--was 40%.)

The ‘output’ of the decision-aid was given to the treating clinicians, who were encouraged to incorporate it in the family meeting which was scheduled for day 2 after enrollment for all patients. Control patient surrogates received no decision aid or other information, and just received 'usual care', apart from that everyone was supposed to have a family conference on day 2 post enrollment (and nearly everyone did).

They measured many, many things here, but the major outcomes they were looking at were clinician-surrogate concordance about prognosis, surrogate understanding of prognosis, surrogate well-being both acute and long-term (anxiety, trauma symptoms, etc), patient outcomes like LOS, in-hospital and long-term mortality, etc.

The simple way to summarize their findings is that the intervention had nearly no measurable effect on anything: most importantly on what happened to the patients (eg, ICU and hospital LOS, ICU and hospital mortality, long-term mortality, % who received tracheostomies, % who had discontinuation of life-prolonging technologies, etc), as well as what happened to the surrogates (anxiety and trauma symptoms, satisfaction with care and communication, etc). One of the numerous pre-specified secondary outcomes (changes in a decisional-conflict scale), was slightly better in the intervention group - by 0.4 points on a 5 point scale. Note that the family meetings which were part of the protocol for everyone were recorded and similar content was discussed at these meetings, regardless of randomized group.

The very, very interesting findings were, at least to me, the ‘concordance’ and prognosis findings (if you want to look at this yourself, the best place to go is Online Supplement 3, by the way).

Concordance (meaning surrogate and clinician ‘agreement’ on prognosis which here was measured as chance of 1 year survival) was not improved by the intervention. Fundamentally, that seems to be because surrogate’s assessment of prognosis was essentially impervious to information about prognosis as either presented by the prognostic model in the decision aid or a clinician in the family meeting.

Notably, the physician’s prognostic estimations were quite accurate on average (I don’t know if they had access to the prognostic model prognosis or not). For the entire study the the physicians and model both predicted a ~50% 1 year survival for the patient group on average. The physicians also did a pretty good job of estimating what the surrogates thought the prognosis to be (which was around 70% 1 year survival on average). The surrogates who had the decision aid did a little better at articulating what they thought the physicians’ prognostic estimation was (they guessed around 58% 1 year survival, when it was actually around 49%). Control surrogates, who did not get the decision aid, did a worse job of articulating the physicians’ estimation (they guessed ~67%). However, regardless of what group they were in, the surrogates in both groups articulated a prognosis of around 70% 1 year survival. Ie, the intervention didn’t improve the surrogates’ own prognostic estimation, even though they knew it was significantly different than the physicians’ estimate of survival.



Along these lines, they were also able to show that even after answering questions about what the patient’s values would be, and then being told by the decision aid some sort of conclusion (eg your loved ones care goals fit best with eg, balancing longevity with quality), a large number of surrogates actively adjusted that conclusion (‘disagreed’ with that conclusion so to speak, although the surrogates themselves were the one who gave the answers to the questions about patient values), and almost all of them who did that adjusted the care goals towards being more aggressive (see the figure - this was about 40% of the group).



To summarize: surrogates substantially overestimated patient’s survival, even when presented with the decision aid, and even when they understood that the physician thought otherwise. Many surrogates also disagreed with the goals of care as summarized by their own statements of their understanding of patients’ own values, and wiped that all away to state that the plan of care should be aggressively prolonging life.

There is this idea that what we need to do is somehow say the right words to these terrified, grieving, desperate families, and once we figure out the right words, spoken by the right person/presented in the right way (like a decision aid which focuses on clearly stating prognosis and prompting surrogates to reflect on the patient's values/preferences) that will lead the surrogate/s to make the 'right' decision. 'Right' decision meaning, I guess, the one purportedly the patient would have made ('substituted judgment'), acknowledging that that is typically unknowable. The problem with this model of surrogate decision making is that it does not at all seem to be what surrogates actually do, and data from this study basically show even when surrogates know things about a patient's values and preferences, many of them are unwilling to 'enact' those. Indeed, a substantial number of the surrogates in this study seem impervious to 1) objective data-based prognostic information, 2) accurate prognostic information shared by the patient's treating physician, and 3) acknowledgement of the patient's own values and preferences when they make decisions. And, in fact, it appears that a substantial number of surrogates don't really make any decision at all, and you wonder if they even perceive there to be any decision to be made, because the only 'decision' they are going to endorse is 'do everything.’ I’m really grateful for this study for really showing us that this approach may not be helpful.

And my question to us, collectively, as a medical community, is: so what? Do we think this is a problem? And if so, why? Why is anyone surprised or perturbed that fearful grieving families don't make the same decision that an ethical robot would? The only reason we think it's a problem is because there's been this collective decision the last several decades that, in fact, the right people to be making decisions about what technologies to be applying to a dying body are not the highly trained health care professionals, most of whom went to school/trained for over a decade (and sometimes much longer) just so they can know their way around an ICU, but the shocked, grieving, fearful families, who hear us demand from them, again and again, and in ways that make them feel that they have their loved one’s life in their hands, What do you want us to do? I ask this because if you listen closely to your colleagues, and even palliative people sometimes, you get a sense from some of them is that they believe the problem here is the grieving families, who are ‘in denial’, or ‘unrealistic’, or ‘just don’t trust us’. And, fundamentally, I think that’s the wrong take here.

We’re the problem, not the families.

It also bears noting that in the entire history of our species up until the mid 20th Century, virtually no one had to make end of life decisions for their loved ones, because there wasn't anything that could even be done. Now, it's not at all uncommon for us to have conversations with people about highly technical decisions about where tubes go (or don't go) into their dying relatives' bodies. No one should be surprised it often doesn't go well, and that it's a 'problem' that can't be fixed with communicating data more artfully.

I get it; this is complicated.

There are, for instance, a certain number of patient/families for whom this very nice idea I described above, the happy version of how surrogate decision making is supposed to work, does seem to ‘work.’ Honestly, I’m not too worried about those families - we just need to get them good, realistic information, and they’ll make patient-centered decisions. I also get how unrealistic (and unwise) it is to think we are going to go back to the authoritarian-paternalism days, where an individual physician's personal judgment, subject to all its biases and blind spots, is the unassailable measure of a good decision.

The only way out of this is forward, although I don't myself here have any specific 'policy' proposal to fix this, and I worry all the focus on patient choice (which originally was meant to be a way to empower patients in saying "No" to things, not a way of us in medicine of giving up our role in decision making) just makes things worse, by amplifying this idea that families get to choose medical treatments off a menu at the end-of-life, when there is nowhere else in medicine where we really do that. All the things we are taught to do in palliative care - focus the conversation on the patient, emphasize long-term health and functional outcomes and discuss care goals in that context as opposed to focusing on technical questions, careful, interprofessional attention to the grief and loss the family are experiencing, and actively making recommendations about what we think the best plan is (based on what we know of the patient) - help, undoubtedly, to an extent. But it’s not enough.

For more Pallimed posts about journal article reviews.
For more Pallimed posts by Drew click here.

Drew Rosielle, MD is a palliative care physician at the University of Minnesota Health in Minnesota. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle.

References

1 Cox CE, White DB, Hough CL et al. "Effects of a Personalized Web-Based Decision Aid for Surrogate Decision Makers of Patients With Prolonged Mechanical Ventilation: A Randomized Clinical Trial" Ann Int Med. 2019. Vol 170, 285-297.

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by Christian Sinclair (@ctsinclair)

We are prognosticating beings. It is how we survive. Many everyday decisions begin with an estimation of likely future outcomes. If my first clinic appointment is at 9:15am, and my drive from the hospital to the clinic usually takes 25 minutes, then I need to leave by 8:50am at the latest to give myself time to spare for bad traffic light timing, lack of a good parking spot or some other problem that may delay my arrival. I make my estimates, and go with the safest choice. I could go with my gut and my experience or I could use Waze, an app where I can select where I am leaving from, where I am going and what time I want to arrive by and it will tell me the best time to go based on a much bigger data set from drivers on the roads at that moment. Not only that, I could also use Waze to send an updated map to the clinic team to let them know when I will be there, so they can plan ahead as well.

But when it comes to medicine, we often deal with prognosis of many different outcomes, but we rarely use data and technology (evidence) and we rarely share this information clearly with others (documentation.) I recently finished the chapter on Prognostication for the new edition of the Oxford Textbook of Palliative Medicine, so prognosis has been on my mind a lot. One key article stuck with me and made me reflect on my practice of documenting evidence-based prognosis. Andrew Bruggeman and his colleagues at UC San Diego reviewed 412 inpatient palliative care notes for oncology patients and only 5 contained documentation of evidence-based prognostication. The validated tools used included the MELD score, the Walter Index, and the Lee Index. They looked for the Palliative Prognostic Score and the Palliative Prognostic Index as well but never found either of those documented.

First of all, I want to say kudos for publishing this research that basically says at their own institution a potentially critical part of a good palliative care note is missing. They are in good company thought because from my discussions with colleagues around the country I have not heard anyone else doing this on a consistent basis. At the organizations where I have and currently work, we do document prognosis but the note template and the EMR are not designed to easily include any particular evidence-based tool. This is consistent with other research of palliative care notes which showed 72% of notes contain survival estimates.

Secondly, we are entering a new age where machine learning and big data are crunching numbers and relationships with more power and speed then our simplistic point-based prognostic tools are capable of. But the output of these tools has not been widely tested, and how they construct their findings can be pretty enigmatic and not inherently logical to clinicians. These new black box prognostic machines may help us identify patients who may benefit most from palliative care, but I think we have not quite dealt with the ethical ramifications of what improved prognostic accuracy means for our clinical work and how it is delivered at scale.

We are barely starting to make evidence-based prognostication part of our clinical work and there are strong forces already at play using potentially more accurate tools that we don’t comprehend. This will be an important part of not only palliative care and hospice delivery, but health care delivery, health care reform, and even the overall insurance-based payment structure. We need clinician eyes, ears, and voices involved with the advances in prognostic science, and it begins with all of us being willing to use the tools we currently have and include them in our daily work.

If you are interested in this topic, I will be hosting a conversation about prognostication at the #hpm chat on Twitter Wednesday, August 29nd, 2018 at 9pET / 6p PT.

Christian Sinclair is the co-founder of #hpm chat and Editor-In-Chief of Pallimed. He leads the outpatient palliative care oncology clinics at the University of Kansas Health System. When he is not thinking about predicting the future, he can be found watching the Back to the Future trilogy looking for plot inconsistencies. You can find him on Twitter at @ctsinclair.

References

1: Bruggeman AR, Heavey SF, Ma JD, Revta C, Roeland EJ. Lack of documentation of evidence-based prognostication in cancer patients by inpatient palliative care consultants. J Palliat Med. 2015 Apr;18(4):382-5. doi: 10.1089/jpm.2014.0331. Epub 2015 Jan 21. PubMed PMID: 25608220.

2: Zibelman M, Xiang Q, Muchka S, Nickoloff S, Marks S. Assessing prognostic documentation and accuracy among palliative care clinicians. J Palliat Med. 2014 May;17(5):521-6. doi: 10.1089/jpm.2013.0454. Epub 2014 Apr 10. PubMed PMID:24720384.

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by Christian Sinclair

As a palliative care doctor who works in an outpatient cancer center, I have come to value the time I get to see the patient concurrently with the oncology team. I am able to learn much more about the particular individual case, so I can be more helpful to the patient. But in the long game, the added benefit is a more nuanced understanding of the oncologist-patient relationship. Hearing the language an oncologist speaks to a patient is much different than having an oncologist give me a 45-second summary of that same discussion and medical plan. Yet, I suspect my mere presence (even when non-participatory) changes the nature of these conversations, a la the Hawthorne effect.

Oh, to be a fly on the wall!
Dr. Sarguni Singh from the University of Colorado, Denver is the lead author (working with Dr. Toby Campbell's group out of the University of Wisconsin) performed a study, "Characterizing the Nature of Scan Results Discussions: Insights Into Why Patients Misunderstand Their Prognosis," which was published online early in the Journal of Oncology Practice. (OPEN ACCESS PDF!)

The researchers analyzed recordings of oncologists and patients with stage IIIA, IIIB, or IV non-small cell lung cancer in the outpatient setting. These recordings were from another large study and are over a decade old now. But as the authors pointed out, there is not strong evidence that outpatient communication strategies have changed wholesale in oncology, (although treatment options have changed drastically with the introduction of checkpoint inhibitors, but that's not relevant here.)

The basic info about the visits (time, structure and broad themes) I found the most interesting, and for most clinicians it leads to the strongest behavior changing items. More on that in a minute. The team spent much of the time doing Conversation Analysis (with capital letters), a very involved qualitative research method. A 10-minute conversation may take 10 hours to code as they listen for changes in pitch, volume, tone, pauses and prosody. Prosody, prosody...such a lovely word, you may be thinking, I should know what that means. Prosody, a term which here means pattern and tone to ascribe meaning to a spoken word or phrase.

For those many of you in palliative care who geek out on communication, make sure to read the Appendix, where they explain laudable event proposals, blocking, objectionable projections, appreciation sequences. I will be on the look out for these next week in clinic. Some even emerging from my own vocal cords, because these exist beyond the domain of oncologsts.

The Results
I knew instinctively my clinical conversations were structured, but I had not fully realized it until reading this paper. 77% of the conversations were structured in the following phases:

• symptom-talk (Any cough? How's your breathing?)
• scan-talk (So your labs and scans are back....things looks stable...)
• treatment-talk (I think that chemo has done all it can for you, let's look at something new)
• logistic-talk (You'll need to come in for labs before your first new chemo treatment...)

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by Drew Rosielle

In neuro-critical care, prediction of outcomes is often tricky because of the wide variability in the ability of the brain to recover and the usual long periods needed before seeing what is the limit of recovery. Most people are familiar with the Glasgow Coma Scale, but back in 2009 Mayo Clinic Proceedings published a study of the FOUR score), which presents some prognostic data for ICU patients. FOUR = 'Full Outline of UnResponsiveness.' (It is also written as 4S. - Ed.)

This was a single institution study (Mayo Rochester) primarily designed to investigate whether the FOUR score is a reliable coma scale when applied in ICUs by non-neuroscience types (it has been studied before in neuro ICUs - this study involved non-neuroscience trained nurses, consulting docs, fellows, and intensivists in several ICUs at Mayo). Part of the context for the score is that the Glasgow Coma Scale, the most commonly used coma scale, measures verbal responsiveness - something which is difficult to do on intubated patients. The 4S measures eye response, motor response, brainstem reflexes, and respiratory pattern and assigns 0-4 ratings to each category (see graphic below). All ICU patients (not all intubated) over a 1 year time frame who had 'abnormal consciousness' and who weren't receiving pharmacologic sedation or paralysis were included for the study. Basically different ICU team members were assigned to do 4S evaluations on these patients, and interrater reliability, etc. was measured.

100 patients were evaluated - 45% intubated - with a broad range of illnesses (at least 40% had some primary CNS pathology such as strokes, 'craniotomy,' etc.). Despite the fact that they noted an inclusion criteria of 'abnormal consciousness,' about a 3rd of the patients were described as 'alert': basically all the non-alert patients either had a primary CNS pathology or anoxic or metabolic encephalopathy (as expected; those patients without those issues would be expected to either be alert or pharmacologically sedated). 33% of the patients died - all of them either by neurologic criteria or after life-prolonging treatments were withdrawn due to poor prognosis.

Basically, the 4S looked good from an interreliability, etc. standpoint, and compared favorably with the GCS. As expected, lower (worse) summative 4S scores were associated with worse outcomes including in-hospital death (e.g. every 1 point decrease in the 4S was associated with a 15% improvement in the odds of in-hospital survival). (Note that is odds not rates - most of the outcomes are presented as odds ratios and not actual event-rates.) The only rates presented are for those 9 patients with the lowest 4S scores (presumably zero): 89% died in-hospital, and one assumes that 6 of these were the ones declared dead by neurologic criteria. Notably, the in-hospital mortality for those with the lowest GCS score (3) was 71%, suggesting perhaps the 4S (as it measures more characteristics than the GCS) can more precisely characterize the very sickest.

That said, from a clinical standpoint one isn't particularly helped by new data that a patient with no signs of consciousness, withdrawal to pain, brainstem reflexes, or spontaneous respirations, without the help of sedating drugs (ie a 4S of 0), is highly likely to die. We knew that already, and of course this paper wasn't intended to really demonstrate anything other than the 4S is a reliable way to measure/stratify degrees of unresponsiveness/coma. It is a reminder to me as a reader of this research how my interests in what data I want presented (in this case gross in-hospital mortality rates for each 4S rank) as I naively hope for answers/clinically-relevant information is not what others find important, even though they have the data. The 4S seems to be a straight-forward and easy to measure coma scale, and perhaps we'll be seeing more of it, including frank outcome data.

Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. For more Pallimed posts by Drew click here. 

References:
Iyer VN, Mandrekar JN, Danielson RD, Zubkov AY, Elmer JL, Wijdicks EFM. Validity of the FOUR score coma scale in the medical intensive care unit. Mayo Clin Proc. 2009;84(8):694-701. doi:10.1016/S0025-6196(11)60519-3. Open Access PDF

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by Elizabeth Lindenberger

I know I am not alone in my disappointment this week with the authors’ conclusions in “Effect of Palliative Care-Led Meetings for Families of Patients with Critical Illness: A Randomized Clinical Trial.” The study intervention involved the provision of an informational brochure and two focused meetings specifically designed to provide families with information about prognosis. The study found no difference in most outcomes between usual care and the intervention, and PTSD symptoms were in fact increased in the intervention group. The authors concluded that "these findings do not support routine or mandatory palliative care–led discussion of goals of care for all families of patients with chronic critical illness.” What? How does this very specific, targeted intervention that deviates dramatically from usual palliative care practice become equated with palliative care?

As a palliative care physician at Mount Sinai, I participated in this study. I am not surprised by the negative results. These family meetings were highly scripted, designed to provide information about prognosis, and rarely involved the primary team. The study had great potential to make a contribution to the practice of critical care medicine, specifically to answer the question of whether offering prognostic information earlier in the critical illness trajectory could benefit patients and families. However, the study was designed such that the informers were not the patients' treating physicians. In fact, ICU team physicians participated in only 3-8% of meetings. Palliative care providers were chosen to given the information because of their expertise in communication. And yet nothing about the intervention resembled a standard palliative care intervention, which would have involved the entire IDT, multiple meetings for relationship building, information provided only when welcomed by the family, and the 100% presence of the ICU treating team at the meetings.

I remember back to one particularly distressing family meeting spent managing a family member’s anger at what to them was shocking, new information about prognosis provided in the study brochure. This family was not ready to receive information about prognosis, especially without their primary team present. This is not standard palliative care. Again, I believe this study was bold and important in testing a specific information-giving intervention for a vulnerable patient population at high risk for unwanted overtreatment and suffering.  It is the study’s conclusions that are flawed, and I worry about their potential for depriving critically ill patients and their families from the benefits of true gold standard palliative care.

Elizabeth Lindenberger, MD, is a palliative care physician and program director for the Hospice and Palliative Medicine Fellowship at the Icahn School of Medicine at Mount Sinai in New York. This is her first Pallimed post.

(For more opinion on this JAMA article please see Alex Smith's post at Geripal - Ed.)

Photo Credit: @ismaelnieto

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Photo by John Flannery via Creative Commons

By Lori Ruder

Who wants to tell someone their loved one is dying?

Intensive Care Unit patients at an academic medical center are the sickest of the sick, so chances are someone will have to. These are heart-wrenching conversations in any instance, whether the patient is young or old. However, conversations regarding the death of someone well into their decades are no doubt a whole lot more palatable than those regarding someone who has their whole life ahead of them.

Before me was a young man in his mid-twenties who had been diagnosed with an aggressive cancer only six months prior to my caring for him. It was wildly metastatic, progressing through all treatments. He came to the ICU with progressive renal failure to be “tuned up” in hopes of strengthening him until the next round of treatment could start.

From the doorway I witnessed a gaunt, jaundiced young man who looked like he should be at home with hospice. Surrounding him were devoted family members. The nursing voice in my head instantly said, “This young man is dying, what are we doing?” Then he smiled.

And then the voice in my heart said, “Why would they want to give up?”

I spent that night shift getting to know and building trust with his parents, assessing where they stood in the process of realizing they were losing their son. Both were exhausted; his mother was nodding off in the chair. The patient was tired, sleeping in between interactions, his father lovingly helping him use his pain pump. He never complained although under the covers was a taut and rigid abdomen and 4+ pitting edema. And with each interaction I got a bright smile.

Who would want to tell them their son was dying?

The next day a family meeting was scheduled and apparently no one from the ICU team wanted to tell them. According to the day shift nurse, the meeting was a disaster with a lot of unnecessary talking and not much listening. No clear plan was made except to continue what we were doing and reassess tomorrow.

What I saw in the bed that second night was a young man with days to live; years of experience had honed my prognostication skills. Did we assume his family knew he was dying? I stopped and asked myself a few hard questions. What if it was my son in that bed?  What if someone knew that he had days to live, would I want to know? Wouldn’t I want the chance tell him all the things I wanted him to hear while he was awake enough to hear them so that he could respond with his own?  Wouldn’t I want someone to be honest? I realized it was going to have to be me.

In the past I would not have been comfortable taking that step, instead waiting for a physician to be the bearer of bad news. However I was in the middle of a Gero-Palliative Nurse Residency program where I was learning ethical principles and communication skills. I knew I had the right and responsibility to advocate for my patient. I knew that it wasn’t simply bearing bad news, it was giving the gift of honesty.

I spent the first two hours straightening his room, bathing him, caring for him. The simple task of cleaning his room, removing extra equipment, and making him more comfortable did wonders for his family. They were so thankful. It’s a delicate dance I do, an art form of quiet caring, listening, and trust building. I am very nervous about my performance. Will I be strong enough to get out the words they need to hear? When will be the right time? Will I miss my chance? How will they react?

I watched his Oncologist stop by, hoping this would be a great segue. He could start the difficult conversation and I could join in. But he sorely disappointed me, glossing over the obvious and saying, “Well, let’s see how things look tomorrow.” Tomorrow? What if tomorrow brings respiratory distress and a ventilator? Cardiac arrest and chest compressions? There weren’t too many tomorrows to look forward to.

I continued on with my dance, learning about what a good son he was, very smart, hardworking, so strong through it all, always ready with a smile. I knew that smile.

Who would want to tell them he was dying?

I would. The moment finally came at 3  a.m. when his mother awoke after I turned and repositioned him. I sat down next to her and asked if I could be honest about what I was seeing, because as a mother that’s what I would want for myself.
She agreed. I told her he was dying and that it would be soon, within a day or two. That I would hate to see him in any more pain or have more procedures. And that since he still wakes up she could say what she needed to say and so could he. I sat with her for an hour as she told me that they weren’t dumb, that they knew, how she had been ordering black sweaters in preparation.

That they knew in their brain, but how do you tell your heart? They were waiting for someone to tell them. Instead medical interventions kept getting offered. They were waiting for someone to tell them.

The next hour I spent with her, listening to her love her son and be so proud of him, helping her grieve and prepare for what would happen in the next day was one of the most special of my nursing career. I arranged for a transfer to the Oncology floor they were familiar with so that they could be with the staff they knew, in the comfort of a nice big room. He passed away at 9 o’clock that night.

Year after year nurses are ranked as the most ethical and honest profession. Bedside nurses have 24-7 intimate contact with patients and families. We are in the trenches with them, we know their situation and what they are going through and have been through better than any other medical professional involved in their care. We see them at their weakest and most exposed and vulnerable, yet we provide as much dignity as possible.

Why wouldn’t we be some of the best people to broach such a difficult subject? Palliative Care training and knowledge gave me the moral courage to take charge and do and say what many times I waited for physicians to do. Empower your nurses through training. Give nurses the knowledge, the confidence, and the power to make a difference in the very vulnerable population of those who are dying. Many are waiting for you to open that door so that they can accept your gift of honesty. My experience reaffirms my true belief that while it can be very rewarding to help someone live, it can be just as rewarding, if not more, to help someone die.

Lori Ruder BSN, RN, is a Certified Hospice and Palliative bedside ICU nurse at University Hospitals Case Medical Center and an Advanced Practice Nurse student at Case Western Reserve University.  She encourages all bedside nurses to be certified in Palliative Care because it is what they do every day.  In her free time (what’s that?!)…she will let you know when she finishes grad school. On Twitter: @LoriRuder

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by Liam Farrell

“How long does granny have, doctor?”

“Only a few days,” I said. I was young and beautiful and too green to know that the wise clinician always fudges the prognosis. Within minutes the message was winging its way across the globe.

A few nights later and there were relatives tucked in every corner, swinging on the rafters, hanging from the roof, dangling from the curtains. Not that granny was an angel. To paraphrase Jonathan Swift: true to her profit and her pride, she made them weep before she died. But as La Rochefoucauld observed, we are more often loved for our vices than our virtues, and the relatives had ridden in on the four winds, swum dangerous rivers, climbed huge mountains, endured biting insects and even Ryanair flights. They’d come from Boston, Singapore, Sydney, Vladivostok, all determined to be there at granny’s deathbed.

So I was disconcerted to find granny looking much better, quite perky even. Breaking bad news is all part of the job, but breaking good news was a novel challenge. I’d parked my car on a downhill slope, facing away from the cottage, to facilitate a quick getaway. If it proved a long pursuit, had I enough petrol, I wondered.

“I have good news,” I said, trying gamely to give it a positive spin, “Your granny’s not dying after all. She’s looking much better. Ain’t that great?”

There was an ominous silence, which, inexperienced as I was, I felt compelled to fill.

“Underneath it all, she has a great engine, heart like a lion, strong as a horse, and all,” I continued, starting to babble, hoping that this testament to the clan’s animal virility might soften the blow.

“We were told she was very ill,” accused Boston.

A rebellious muttering began. “It’s cost me a bloody fortune,” from the deserts of Sudan. “My return flight is next weekend,” from the gardens of Japan. “I’ve taken a week off work for this,” from Milan. “I knew there was bugger all wrong with her,” from Yucatan. The crowd shifted threateningly forward, as crowds do when someone has a rope, a nearby tree has a convenient low branch, and the gestalt has a lynching in mind.

“Don’t lose hope,” I said, “I’ve adopted the Liverpool Care Pathway.”

Dr Liam Farrell (@drlfarrell) has been a columnist for many years, for the BMJ and Lancet among others. He was a family doctor for 20 years in Crossmaglen, Ireland, and is a former tutor in palliative care. Follow his Facebook page.

 
Related Links

• Compassion in Dying: Liverpool Care Pathway Factsheet
• Independent Review of the Liverpool Care Pathway: More Care, Less Pathway: A review of The Liverpool Care Pathway 
• Leadership Alliance for the Care of Dying People: One Chance to Get it Right

Join in the conversation on the #HPM tweetchat this Wednesday, January 20th, 2015 at 9 pm EST, when we discuss the following questions:

Topic 1: Do cancer patients get more palliative care than elderly multi-disease patients? Why is that?

Topic 2: What do patients and families expect of prognosis, especially close to death?

Topic 3: How can we help patients and families prepare for death?

What: #hpm chat on Twitter
When: Wed 1/20/2016 - 9p ET/ 6p PT
Host: Dr Liam Farrell @drlfarrell

Please follow @hpmchat and check hpmchat.org for more details. You can access the transcripts and analytics of #hpm chats through @Symplur.

Image credit: Time Clock via Wikipedia
Image credit: hpm chat 2016 01 20 by Pallimed
Image credit: More Care, Less Pathway: A Review of the Liverpool Care Pathway cover

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by Amy Clarkson

When we turn on the news or listen to the radio to hear what the meteorologist is predicting the weather will be, we don’t usually call this ‘the day’s weather prognosis’. We use the term forecast, and yet a forecast is essentially the same concept of what a prognosis is.

Predicting the weather and predicting the outcome of a life limiting disease may carry the same foundation, but they differ vastly on their accuracy. Weather forecasting has an overall accuracy for temperature determination (give or take a few degrees) of 85%. A medical prognosis, however, regarding how long someone has to live (give or take a few days or weeks) is usually only accurate 20% of the time, and actually 65% of the time doctors overestimate prognosis by a factor of 3-5.

Yet so often patients who have a terminal disease leave the doctor having latched onto a prognosis as if it’s as guaranteed as an expiration date on grocery goods.

Many factors go into misinterpretations of prognosis. I’ve mentioned overestimation, but research also shows that the longer a doctor has taken care of a patient or the more they know that patient, the more they overestimate. Besides overestimation, another challenge is how doctors even approach prognosis. Often doctors will use something called the median survival rate when discussing prognosis. Patients get this confused with average. Median, however, is just the middle number of a range. If a doctor says, the median survival is 6 months, that means half of the people with that disease die before 6 months. What median doesn’t tell us is, of those people who died before 6 months, did most of them die in 1 month or 5 months? That’s a big difference!

One thing doctors don’t do well is to discuss the worst-case scenario along with the best-case scenario. They assume it’s too depressing to talk about bad outcomes with the patient. While sometimes during prognosis talks patients are shocked, retreat into their brains, and can’t listen to the prognosis, often times patients are waiting for doctors to initiate these tough discussions. One suggestion that can help with both these problems is to have the doctor actually write out the worst-case prognosis, the best-case prognosis and the most likely prognosis.

What can be very challenging is that many prognoses have a very wide range of possibilities. Some cancers carry the possibility of dying in 6 months or living out the rest of your life essentially cured. It’s the same as if a meteorologist announced that for tomorrow’s forecast the possibility was for snow, or maybe rain, but also could be hot and sunny. If you were traveling to a location like that, you’d pack for the extremes, wouldn’t you? This is how we need to treat prognosis as well. Prepare for the extremes.

A good prognostic conversation should do this; explore the extremes so that you can plan. The next time you hear a prognosis think of it as a forecast, but one with only 20% accuracy. Also, be sure to ask for the worst-case and best-case extremes, it will help you prepare for the journey.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune.  It is re-published here with the author's permission under a Creative Commons license.

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by Robert Arnold, MD

Case:

Doctors find it hard to talk about prognosis for a variety of reasons. Sometimes we do not like to talk about it because we are afraid that if we talk about it, it will happen –a self-fulfilling prophecy. I think this is often a reason that some doctors do not like to make patients DNR - they worry that if we make the patient DNR that we will not try as hard to correct problems and thus they be more likely to have a cardiac arrest (the data is controversial and this may be true). Other times, we do not like to talk about it because it means predicting the future, and when you predict the future you are often wrong (what I call “the weatherman phenomenon”). Patients or families may get mad when our predictions are incorrect which may lead to difficult conversations in which we feel bad. Doctors, not wanting to be wrong or feel inadequate, find it easier to be vague (“He is very sick and may not do well” is similar to the weatherman saying, “It is going to get brighter as the day goes along before darkness sets in”).

Discussion:

The problem is that prognostic information, like the weatherman's predictions, is vital to people's lives. It is hard to make decisions about medical interventions, about when families should come to visit their sick loved one, about when to have serious conversations without some idea of what the future might bring. For that reason, patients and families are often frustrated when doctors refuse to make any predictions about what might happen in the future. Families understand that the future is unpredictable, and the doctors are not all knowing and cannot know the future. Yet, they still want to have some ideas about what we are thinking because like weathermen, while we are not always right or wrong, we do have some expertise in prognostication.

For that reason, I have assembled four general hints to improve your ability to help the family think about prognostic information. (These recommendations assume that the patient/family wants to know prognostic data – about 75% do according to studies.) The purpose of these rules of thumb is to help the family begin to think about what their loved one would say about these possible futures.

Now for the four things that you might want to do:

1) Place your information in context. It is ok to admit our limitations in prognostication (“I do not have a crystal ball”). Doing this places your prognostication in context and is honest. However, it needs to be followed by an offer to provide information based our expertise and the available data (“I can however give you our best prediction, based on our experience and expertise, about what we think the future will look like”)

2) Offer outcomes as best, worst and most-likely. Toby Campbell at the University of Wisconsin has talked about the helpfulness of talking to patients and/or families about the best, the worst and the most likely outcomes. What I like about this formulation is that I do not have to be right. I can be hopeful about what may happen if everything goes well and yet it also allows me to be realistic about the most likely outcomes. It also allows space to be pessimistic about what the alternatives are.

This formulation is helpful to families because it gives them a range of outcomes to get their head around. They can think about what it would mean if the “best” outcome is one which the patient would find undesirable. If the most likely outcome is the patient is going to be in a nursing home, they have an incentive to start talking to the social worker about disposition. Finally, talking about “worst” outcomes is a chance to think about what outcomes would be “worse than death” for their loved one.

3) Include short and long term prognoses. Remember when we prognosticate to think not only about this hospitalization but also about the next 30 days, 90 days and year. It is often the case, particularly when patients are in the hospital, that we prognosticate for the duration of the stay that we are responsible for and forget to talk about the bigger picture. For patients and families the question often is not only what are we going to think is going to happen in the short term, but also to give a sense of what we think the longer term will be like. (Please see e-prognosis.com for what I think is the best website on this data.)

4) Include functional prediction in addition to mortality predictions. Finally, when you talk about prognosis, remember to talk both about mortality and about function. Most people in America are not vitalists – that is surviving with no cognitive, physical or social function – is often not a good outcome. Given that they are not vitalists, it is important to get again your sense of what three months from now the best, worst and most likely outcomes are so that they can begin to think about what their loved one might think about those possible realities. Talk both about functional status expectations and what that means for setting of care (home independently, home with 24hr care, SNF)

Resolution of the case:

You do not have to be quantitative in your description of what you think the future is going to be – in fact, the data suggests that patients' and families' understanding is just as good when we use qualitative terms as when we try to give percentages.

It is also important to remember that when you give this information it is often heard as disturbing news to the patient or family because by you naming it, you make it more real even if they were not worrying or thinking about it. Strong emotions are likely to follow your predictions, and it will take some time to acknowledge these and ask what questions they have about your thoughts of the future.

Someone said that 90% of life is just showing up. This saying might be true of prognostication – you have to show up and give your most informed views (you do not have to be right). Beginning to offer your best judgments about the future will go a long way in helping patients and families understand what they are facing and hopefully do a better job of preparing for and making decisions about the future.

Image Credit: Trouble with Weather Forecasting by Christian Sinclair for Pallimed / Photo Credit: In the clouds by Kevin Dooley via Flickr Creative Commons
Photo Credit: Amapolas magicas by Jacinta Iluch Valero via Flickr Creative Commons

Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in healthcare. Patient details may have been changed by Pallimed editors to help with anonymity. Links and minor edits are made for clarity and Pallimed editorial standards.

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Sydney Morss Dy, MD, MSc is Physician Leader, Harry J. Duffey Pain and Palliative Care Program, Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, where she has had the great good fortune to work closely for many years with clinical pharmacists, pain specialists, social workers, and a psychiatric liaison nurse, who have taught her much about pain management and the use of opioids.

Photo Credit: @Ctsinclair via Twitter
Photo Credit: Werner Kunz via Compfight cc

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JAMA Internal Medicine (JIM, you'll always be Archives of Internal Medicine to me) has published a study of an outcome prediction tool for in-hospital cardiac arrest. Specifically, a tool to predict the rates of neurologically intact survival after an in-hospital arrest. The developers of the tool call it GO-FAR (Good Outcome Following Attempted Resuscitation).

One could imagine ways of re-titling it FORe-GO, if one chose to spend one's time imagine such things.

This is the best tool of its kind that I've seen, although one needs to be very clear about what it's actually predicting.

The paper mostly describes, in detail, the derivation and validation of the tool. I won't belabor this - they did a good job of it, used a large dataset, created a model, tested and validated it to get the best receiver operator curve, etc. The data come from the massive, US-based, 'Get With the Guidelines Registry' (which used to be called the National Registry of Cardiopulmonary Resuscitation). The GWGR collects standardized data on in-hospital cardiac arrests from 366 hospitals in the US (all types and regions of hospitals) (the national rate of CPR survival to discharge of 18% which most of us are aware of comes from the GWGR). The GO-FAR data come from arrests between 2007-2009 (51,000 patients).

Worth belaboring, because this is critically important in understanding if one chooses to use this as a tool to help patients understand CPR outcomes, is how they defined a good outcome: a Cerebral Performance Category (CPC) of 1. CPC of 1 means:

"The patient is conscious, alert, and able to work but might have mild neurologic or psychological deficits (such as mild dysphagia or minor cranial nerve abnormalities). Patients with a CPC score of 2 have moderate cerebral disability and are able to live independently and work in a sheltered environment. Disabilities may include hemiplegia, seizures, ataxia, dysphagia, or permanent memory or mental changes. Patients with CPC scores of 3 through 5 progress through severe cerebral disability, coma or vegetative state, and finally brain death." 

This is important because while I'll venture to claim that nearly everyone would agree CPC scores of 3-5 are dismal outcomes, I think there could be a substantial number of people for whom a CPC of 2 would be acceptable. Not welcomed, not a 'good outcome' (which is, granted, what the researchers here are trying to predict), but better than death for some. So to be clear, the GO-FAR tool predicts rates of survival to hospital discharge with a CPC of 1, every other outcome from a CPC of 2 to death are lumped together as bad outcomes.

GO-FAR is being explicitly developed to help inform discussions at the time of hospital admission, so they deliberately excluded patient/CPR characteristics which predict outcomes but wouldn't be available necessarily to the admitting clinician (such as initial rhythm after arrest, site of arrest as someone may be admitted to the floor then transferred to the ICU prior to arresting). The characteristics which survived their analysis and were included in the final index are below. They very nicely also mentioned what the overall survival to discharge with good outcome was in all of these categories (remember, this is not overall survival, this is survival with a CPC of 1). The overall survival with good outcome rate for the entire dataset (all-comers) is 10%. 

• Neurologically intact/minimal deficits at time of admission - CPC of 1 (this predicted a better outcome; everything else here predicted worse outcome) (18%)
• Major trauma (reason for admission) (6%)
• Acute stroke (reason for admission) (3.7%)
• Metastatic solid tumor or any hematologic malignancy (5.2%)
• Septicemia (basically they mean active bacteremia here; not the sepsis syndrome) (3.6%)
• Medical non-cardiac diagnosis (reason for admission; ie, patients admitted with cardiac conditions did better) (5.6%)
• Hepatic insufficiency (bilirubin greater than 2mg/dl or AST more than 2 times the upper limit of normal) (4.4%)
• Admitted from a skilled nursing facility (3.2%)
• Hypotension or hypoperfusion (5.9%)
• Renal insufficiency (creatinine over 2mg/dl) or dialysis (6.4%)
• Pneumonia (5.2%)
• Age over 70; the older the worse the outcome (10.2% 70-74 down to 4.5% for over 85 years).

Ebell MH, Jang W, Shen Y, and Geocadin RG (2013). Development and Validation of the Good Outcome Following Attempted Resuscitation (GO-FAR) Score to Predict Neurologically Intact Survival After In-Hospital Cardiopulmonary Resuscitation. JAMA Internal Medicine PMID: 24018585