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by Michael Pottash (@mpottash)

Several luminaries of palliative care – writing in the Journal of the American Medical Association – recently outlined a strong case against advance care planning, referring specifically to advance directives and the efforts to plan for a future illness state. Planning for the end of life and documenting preferences was meant to improve “goal-concordant care” by providing a road map of a person’s wishes for the end of their life when they can no longer communicate for themselves.

When the United States Supreme Court ruled against the family of Nancy Cruzan, they effectively placed a limit on the right to refuse medical treatment for those unable to speak for themselves, declaring that while there may be a “right to die” even for an incapacitated patient, the state may require clear evidence to overrule its interest in the sanctity of life. In addition to the changing legal landscape came our growing anxieties around medical technology and its encroachment on the boundary between life and death. We have become enamored by the idea that clearly documented preferences, whether in a legal document or in a medical chart, could save us from some future purgatory between life and death.

As the advance directive industrial complex grew, it soon became en vogue to claim that the ubiquitous completion of these documents could even curb healthcare spending. The common wisdom became: 1) people don’t want aggressive medical interventions at the end of life - they want to die peacefully at home, and 2) medical interventions at the end of life (that people don’t really want anyway) is expensive, so 3) if we can get people to document their preferences, we can save a lot of money by avoiding unwanted, expensive medical interventions at the end of life.

The drum of discontent over advance care planning, especially advance directives, has been beating for a while now. In reviewing the landscape of evidence, it seems that advance directives may not be able to consistently influence end of life care in a measurable way. Therefore, it is not surprising that the theorized cost savings to the healthcare system never materialized. Not only do the vast majority of Americans not complete advance directives, but there is good evidence that they don’t actually want their documented preferences to be followed. They would rather have their doctor and someone they trust make those decisions in real time.

More concerning, focusing on advance directives may not even be ethical. It asks people to make decisions for their future disabled selves – often focusing on function and independence. Yet we know that people are generally more resilient than they believe and adapt to all kinds of changed and debilitated states. We also know that able bodied people tend to discount the quality of life of someone living with a disability, even when that person is our future selves. This issue alone has driven a wedge between the disability community and medicine, and continues to be a blemish on the otherwise inclusive culture of palliative care. There are serious ethical problems in asking people to decide today what their future selves would consider a life worse than death.

In the JAMA article, the authors recommend that advance directives and future-oriented conversations be deemphasized in favor of 1) documenting a healthcare surrogate - someone to relay our values and guide clinicians based on what they believe would be in our best interests - and 2) training clinicians to have “high-quality discussions” in the moment, when “actual (not hypothetical) decisions must be made.” That makes a lot of sense. And yet, we still require a framework for how to care for our patients before critical illness and end of life, for those patients still living with serious illness. What are the metrics of success if not completing advance directives or documenting future preferences? In our outcomes obsessed healthcare system, where is the value in informing our patients of what to expect in the future?

Perhaps a better framework for thinking about these future-oriented conversations is to be found in the work being done as part of Ariadne Labs Serious Illness Care Program and others like it. This program is training clinicians to have Serious Illness Conversations with their patients before they end up in the final stage or in intensive care. Instead of measuring success in outcomes, such as an advance directive or a documented preference, they want to know if patients and their clinicians find these conversations valuable. For example, they ask patients: 1) Did this conversation give you a greater (or lesser) sense of control? 2) Did you get the right amount of information from this discussion? And they ask clinicians: 1) Did you learn something surprising about your patient? 2) How did this discussion affect your patient’s emotional state? 3) Did your patient have a good understanding of prognosis? They seem to favor process questions: Were these conversations feasible, acceptable, and were you satisfied?

This approach to serious illness conversations – focusing on the process of informing and tending to emotion in lieu of attempts to influence future outcomes – may be a big (and possibly disappointing) paradigm shift for our outcomes-driven health system. Occasionally, Medicine’s role is to heal or to cure, sometimes it is to ease suffering, and often, all it can do is inform and provide counsel. It can be hard for us clinicians to realize that we cannot fix. Sometimes the only reason to do something is because it is what patients expect, it is what they need, and because it is the right thing to do. Is that enough of a reason to invest resources in hiring people to do this work, and to train others to become proficient? Though it may not lead to universal “goal-concordant care” or to cost savings, is it enough for us to do it because it is right? And can we live with that?

For more Pallimed posts about Advance Care Planning.
For more Pallimed posts by Dr. Pottash click here.

Michael Pottash MD MPH is a Palliative Medicine Physician at MedStar Washington Hospital Center and Associate Professor of Medicine at Georgetown University School of Medicine.

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by Drew Rosielle (@drosielle)

Several years ago I was giving a talk in front of a mostly palliative care audience and asked, "How often do you find yourself, in the care of your patients, saying to yourself something like 'Thank the stars this patient has a healthcare directive (HCD)'?" The overwhelming answer was a bunch of shrugs and people agreeing occasionally (but not routinely) HCDs are helpful.

For something that seems so central to our work, why is it that so many of my colleagues that day were lukewarm about their utility?

It's fair to say that the last few months have been a controversial one in the hospice and palliative care communities when it comes to ACP, triggered by Dr Sean Morrison's editorial in Journal of Palliative Medicine: Advance Directives/Care Planning: Clear, Simple, and Wrong.

I've been mulling over that editorial for a couple months now and then noticed that, arguably, one of the most important advance care planning (ACP) studies in recent history has just been published, although probably not for the reasons the investigators were hoping for, and I thought I'd write about where we're at a bit for Pallimed.

This post is going to be about my own thoughts as to why I mostly agree with Dr Morrison's editorial. The next post will be about this tantalizingly important paper that was just published.

If you haven't read Dr Morrison's editorial, please read it now--it's not that long and it seems to be open access at the moment. Here's his top-level argument:

As of May 2018, 80 systematic reviews of advance care planning covering >1660 research studies had been published and the National Institutes of Health and the Patient-Centered Outcomes Research Institute had funded >750 research studies at a cost of >$300 million in taxpayer money (an average of $1 million/year). Foundations have spent untold millions. What evidence has all of this research and money wrought? The >1660 studies and 80 systematic reviews on advance directives/care planning have produced only limited and low-quality evidence that advance directives/care planning can actually result in changes in patient, family, clinical, utilization, or financial outcomes. Like the study published in this month's journal, the majority of high-quality research has failed to find a strong link between advance directives/care planning and outcomes of importance. Similarly, despite 30 years of diverse interventions and programs, two-thirds of adults do not have an advance directive (an imperfect yet reasonable surrogate for occurrence of an advance care planning discussion).

I mostly agree with Dr Morrison about this, and will flesh out my thoughts as to why. I need to note that I didn't run any of this by Dr Morrison so any claims I'm making here about what he thinks are my interpretation of his editorial, sort of my own internal conversation with his editorial, and nothing more; I'm not claiming to speak for him. Also--JPM published many letters in response to his editorial, all of which are worth your time reading.

I.
Takes like Dr Morrison's are really controversial (in part) because I think people (clinicians in HAPC), use different definitions of ACP. I sometimes think when people hear stuff like "ACP is not helpful" they think people like Dr Morrison is saying something like "Discussing prognosis and planning for future care with your patients with advanced and serious illnesses is worthless." I.e., this is sort of a 'Big Tent' definition of ACP which includes activities associated with completion of health care directives + really any clinical activity that's in the realm of discussing the future (eg discussions of prognosis, preparing patients for future decisions/what is likely to happen to them in the future, even goals of care discussions). I'm pretty sure though that Dr Morrison and the other detractors of ACP, when they say there's no evidence it actually helps patients, are really talking about the narrow definition of ACP (completion of HCDs and the clinical/healthcare discussions that occur adjacent to HCD patient education and completion), and are not criticizing the idea we should be discussing prognosis / the future with our seriously ill patients.

Also, because I know some of you will be reading this and asking, "But what about Physician Prders for Life-Sustaining Treatments (POLSTs)?"-- for all intents and purposes the following discussion is not really about the POLST movement (which is not to say POLSTs have the sort of evidence behind them we'd like either, but that's another story). All this isn't really about Ariadne's Serious Illness Care project either, and importantly I'll note the Ariadne investigators are doing their best to study their intervention in multiple settings and are not advocating wholesale population wide implementation of their program in the absence of evidence (which is what was done with ACP the last decades).

II.
One could note that there really isn't great evidence for talking with seriously ill patients about prognosis/planning for future care either. That is sort of true, there is some research but not enough and not overwhelmingly convincing (one could look at the recent Ariadne Serious Illness work for some examples of what I mean by sort of true) but honestly I'm less 'worried' about that because as a physician I have a professional obligation to discuss prognosis with my patients. I can't help them make informed care decisions otherwise, and honestly I'm less interested in outcomes research focused on if I should be talking with my patients about the future than how I should be talking with them about the future. I want to learn better/more effective/more compassionate/more accessible/more timely/more culturally- and patient-centered ways of having those conversations, not whether or not I should be having them.

At the same talk I mentioned above, for instance, when people admitted they rarely have found ACPs to be helpful in real clinical practice, I asked people how often are they glad that someone before them had had a realistic discussion with a patient about the future, and everyone indicated that they found this routinely helpful of course.

III.
The same is not true with narrow definition ACP (and from here on out when I say ACP I am only talking about the narrow definition). ACP was adopted as a healthcare innovation really without the sort of scrutiny and demand for proof that it actually helped patients that we'd demand for other innovations like, say, LVADs. The acceptance of ACP as unimpeachably a good, obvious, thing for our patients is so entrenched that people have funded entire careers off of studying how to get people to do ACP, without there being reasonably clear evidence it actually improves patient-centered outcomes.

Much of the ACP research out there is focused on projects/methods to get patients/clinicians to do ACP. I'm not claiming this is bunk research, some of it is really high quality work, however I am claiming that it's high quality work which seems to assume we are benefitting patients by helping them do ACP yet we don't actually yet know that. Importantly here, if you are reading this and thinking to yourself something like I just saw a patient the other day who seemed to benefit in some way from ACP I am not saying you're wrong. I've met that patient too. But, like with anything, acknowledging there are a few patients which benefit from something is very different than concluding something should be a routine, integral part of medicine, implemented widely as a public health intervention, and worth the immense amount of healthcare and research investment of time and dollars spent on it.

I think Dr Morrison's thesis is "ACP is not worth the time/money/effort that has been spent on it as a public health intervention," not "ACP has never helped anyone."

IV.
Some ACP research has been about 'congruence,' whether doing ACP activities predicts whether you will later on get the care/treatments you at a prior date said you would want. Especially in the early days of ACP most of the talk was about 'autonomy' and making sure people get what they want, etc. (Indeed, much of the early talk about ACPs was really centered on things like patient rights and autonomy.) There is a moral and philosophical discussion to be had about that topic and whether this is something we should actually be trying to achieve (because patients wishes change over time, and how can patients really make informed decisions about future health states without actually being in such a state, and does it even make sense to ask patients to sort of 'pre-decide' healthcare decisions which on a good day are bleedingly complicated even for cognitively intact and emotionally stable patients). It's an interesting topic, but it doesn't really matter anyway, because there's no high quality research into congruence showing ACP does anything anyway.

To take a couple examples, there is this very well done Australian study from 2010 in the BMJ (the "Melbourne Study") which did a comprehensive ACP intervention in high risk hospitalized older patients. If you read the abstract you'll think that the intervention improved 'congruence' (meaning patients who did the ACP intervention were more likely to get congruent care than those who didn't). If you actually read the study you'll realize that what the intervention group had was better documentation of their wishes so it was easier to 'prove congruence for them (we don't know if the control group had 'congruent' care because their wishes weren't documented) and we don't actually know if the ACP intervention changed any patient care. The 2nd example is the only RCT that I'm aware of the highly revered Respecting Choices ACP model which looks at congruence. This was a RCT of 300 high risk patients (severe heart failure or were on dialysis) who received usual care or the Respecting Choices intervention. This carefully done prospective trial which followed patients long term showed absolutely no improvement in congruence. Think about this one--this wasn't a study of healthy elders, this was a study of people at really high risk of dying (ie the people most likely to benefit from ACP), 300 of them, and yet they couldn't show any difference. It's research like this that Dr Morrison is pointing to I believe when he says ACP has not been shown to benefit patients.

V.
Many of you are probably aware though of all sorts of positive ACP research. People who have HCDs are, compared with those patients who don't have them: more likely to have DNR orders at the end of life, more likely to spend more time enrolled in hospice, less time in ICUs at the end of life, etc. We have a couple decades of research showing this in multiple settings. The problem with this is that nearly all this research which has shown these lovely associations is observational, subject to major confounding. And there is every reason to believe there is huge confounding at play in this sort of research. That is, patients who are open/inclined towards participation in ACP activities are probably more inclined to want 'less intensive' EOL treatments. Think about your own patients, there is a group of them for whom participating in ACP is pretty easy, they want to do it, it's emotional for them but they are committed to it without much encouragement from us, etc. I think there's every reason to believe that the average patient like that is also far more disinclined to want 'invasive' EOL treatments than patients who will not participate in ACP. What this ends up meaning is that having a HCD may just be a proxy for also being disinclined to want 'invasive' EOL treatments, and the actual process of completion of the HCD doesn't impact care one way or the other because these patients already are the folks who are inclined to enroll in hospice earlier, etc. Again, when you do prospective, controlled research, it's much more difficult to show any patient-centered 'benefit' or change in outcomes, apart from the fact that more ACP is documented, even when you are using one of the most highly investigated and validated ACP tools out there, such as in this trial.

VI.
I disagree with Dr Morrison on one major point--he seems to be advocating that we wholesale abandon ACP as a clinical and research endeavor. I think there is one domain of patient outcomes which is really under researched, and ACP may really help. This is the possibility that ACP's main benefit to patients/families is essentially a palliative benefit to reduce iatrogenic emotional suffering we in healthcare cause our patients/families due to our decades' long abandonment of our dying patients by forcing them to make decisions they don't want to make. Because we have moved in the last few decades to a situation in which we have decided that desperate, grieving family members are the defacto best people to decide, for instance, if and where tubes should be inserted into their dying family members' bodies, we have caused tremendous suffering, and ACP may be a way of mitigating that suffering. I think this idea has potential and it has increasingly been a subject of investigation in the last decade, which I'm glad to see, although it's still not being investigated routinely. For example the Melbourne Study, while it didn't clearly show any other benefit, did show decreased stress and anxiety symptoms in family members who participated in the ACP process.

This is presumably what Ira Byock meant when he said "I have an advance care directive not because I have a serious illness but because I have a family.” Ira, of course, might be on to something there, and it's been frustrating to me that so few investigators have taken up that outcome as a primary focus of ACP. Admittedly, it's a bit obscene to say it's just iatrogenic suffering here which ACP might mitigate, of course it isn't, and there may be emotional and social benefits outside that--families talking about what's important together, memory and legacy making that can occur adjacent to ACP completion, etc. What I am essentially proposing is that ACP could be studied in a way that's sort of similar to how the Dignity Therapy investigators approach their intervention. ACP is not Dignity Therapy, however I'm arguing it could be investigated as a sort of analogous suffering-reducing, meaning-making intervention.

Importantly, I am not proposing here that we just shift uncritically from saying ACP is good not because it's all about 'honoring'/'respecting' choices (the pre-decisions, autonomy model), or because it reduces unnecessary healthcare costs / keeps people out of ICUs when they are dying, but because it reduces suffering. It's premature to say that. We can't put the cart before the horse. ACP may yet be worthless as a broadly enacted healthcare intervention, and we should continue to consider any benefits hypothetical until proven otherwise

For more Pallimed posts about advance care planning.
For more Pallimed posts by Dr. Rosielle click here.

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

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by Emily Riegel (@emriegel)

“Why did I keep stressing what was and was not normal, when nothing ... was?”
-- Joan Didion, The Year of Magical Thinking

“Certainty? In this world nothing is certain but death and taxes.”
-- Benjamin Franklin

In normal times, under non-pandemic circumstances, yesterday being April 15 would have marked the United States’ traditional Tax Day. With one certainty, taxes, already rescheduled, we know that we are not in certain or normal times. This year, the novel coronavirus pandemic elevates the immediacy of that other certainty: death.

Since 2008, April 16 is designated as National Healthcare Decisions Day (NHDD). According to The Conversation Project, “this day exists to inspire, educate and empower the public and providers about the importance of advance care planning.” It is a day that people are encouraged to think about things such as living wills, or advance directives, or durable power of attorney. It is also a day for people to simply begin the conversations about how they want life to look even in the face of death.

It is in the particulars of the way that the novel coronavirus behaves, infects, and manifests in us that further raises the urgency to pay attention to advance care planning. By now, it has been widely reported that this virus can strike people of any age, and create a critical illness scenario in an unexpectedly short timeframe. People have heard about ventilators, life support, acute respiratory distress syndrome (ARDS), and other aspects of medicine often reserved for the intensive care units and the people who work in them. People have heard about families not being able to physically come to the bedside to visit their ill or even dying loved ones. People have heard about potential ventilator shortages or lack of intensive care resources needed to try and offer life support and stave off the effects of this virus.

People have heard a lot about this virus, and a lot about its dangers, and many feel stricken powerless. “There’s nothing I can do,” is a thought that enter people’s minds and, like the inflammatory cascade the virus sets off in the lungs, a cascade of anxiety or other emotions is set off.

What if there is something you can do, though? What if, despite all of your hand washing and mask-wearing and social distancing you still get sick. What if, despite access to the best health care and medical professionals you still get even more sick.

This is where many people will stop thinking further, will look away from this thing that is so big and so scary, and wrap themselves in a sort of denial.

But this is right where you can also win back control.

Yes, despite all the things you think you are doing right and all of the best medical treatments available to you, there is a chance that you might get coronavirus and be one of the people whose body will not outlast it.

Take a pause here and look that right in the eye. Let yourself sit with it. Let yourself feel that sink in, as scary it feels.

Now, step back from it, and realize that right now, in this moment, you are okay. You are alive.

And now, knowing that this virus may be your life’s end, but also knowing that you are currently well and able, what you are looking at is the space and time of possibility. The possibility to discuss and determine what matters to you if your life might be limited and how you would want those last days or hours to be.

At times, this is a very practical set of decisions: do I want to be on life support until my body stops despite everything being done to try and save it, even if it might cause discomfort or distress? Do I only want life support long enough for my body to show whether or not it can overcome and recover from this virus, but if my body is telling my doctors and nurses it will not recover, then let the life support stop so I may exit in as natural a state as possible? Do I not want life support started, at all, so that I may be as comfortable and in as natural a state of being as possible should I exit this world?

Sometimes these decisions become more layered with personal practicalities: Who do I want to be at my side if they only let one person come to me as I die? How do I want my family to be made aware of my condition, and do I want to have them virtually present on a phone call or video call if I am dying? What things do I want to make sure people know – the passwords, the account numbers, and also the parts of love and forgiveness and acceptance I want them to have of me?

These aren’t easy questions to answer, and the answers are never the same between any two people. The answers are often not even the same for the very same person depending on the circumstances and any other conditions or factors that might influence their likelihood of recovering. One person might say, “if I ever have a severe head injury I would not want to be kept alive with life support, but if I need life support to try and survive coronavirus then I want it used until the very end.”

People might, perhaps even ought to, consider making one set of plans and directives “in the event of coronavirus,” but another set for “all the other things that might befall me.”

There is also the matter of practical limitations that this virus puts on options. We know that large rooms full of family members surrounding a bedside, singing hymns or laughing at family stories – which all of the times I have witnessed I have said “this is a beautiful way to die—are simply not going to be possible if the culprit of coronavirus. We know that funeral traditions and ceremonies are not going to be the same. We know that this virus will take lives, and will rob people of the idyllic death and their families the gentle closure that we all hope for.

Yet, there are still ways to try and salvage something peaceful and loving from this death. Some people might decide that, rather than wait for their breath to be taken and their time to be short to try and share their feelings with people they love, they might write letters now (here’s a secret: letters will keep, and regardless of when they must be read, they will always be treasured). They might make phone calls now, to say something even as simple as “I need you to know I love you, and I always want you to remember that.” (here’s another secret: loving words always keep in the heart, and will always be treasured as well).

Author and physician Ira Byock has offered a simple set of “The Four Things That Matter Most” to provide a framework that simply but full encompasses what we all want to hear and what we all want to say: Please forgive me. I forgive you. Thank you. I love you. Even if you say this to someone, with no other explanation, they will remember it and cherish it.

Other guidance and resources exist for walking through these decisions. The Conversation Project (www.theconversationproject.org) has a number of tools, ranging from ways to get conversations started to actual documents and state specific information. They have added COVID (coronavirus) specific pieces as well.

The fact is, despite it being the certainty we all have ahead of us, no one wants to think about death. The fact is also that, despite what Mr. Franklin said, there truly is only one certainty and none have yet found a way to elude it, regardless of how much they try to deny it or avoid it or pay or pray or delay their way out of it. It is this ominous reminder of our fragility and mortality that is helping unsettle all of us right now, but there is also still opportunity for finding peace now and in the longer term by addressing advance care planning. It is a gift to yourself, and an act of love to offer your family and the people who care about you who will still be able to know they are following your wishes, eased of that burden, whenever your death arrives.

Emily Riegel, MD, is a physician who spends a lot of time thinking about stuff.

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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 Ben Skoch (@skochb)

Review of Effect of a Lay Health Worker Intervention on Goals-of-Care Documentation and on Health Care Use, Costs, and Satisfaction Among Patients with Cancer. A Randomized Clinical Trial. Patel MI, Sundaram V, Desai M, et al. JAMA Oncology July 2018. doi:10.1001/jamaoncol.2018.2446

I’m sure many, if not most health professionals who have spent time around an oncology unit have encountered patients receiving care in the late stages of their disease and had the thought, “Is this really helping?” Or possibly, “Has anyone asked this patient how they feel about this treatment?” As a palliative medicine physician, it feels like having these conversations have become a cornerstone to the type of care I provide. Knowing palliative care is a relatively young field, the number of cancer patients is increasing, and that those patients on the whole are living longer with their diseases, it becomes clear palliative care clinicians will need help in having these conversations. Furthermore, a dedicated effort to document these conversations will be imperative to communicate those wishes to all of the patient’s healthcare providers.

This quality improvement study indicates help might not be as far away as it might seem. What the study calls a “lay health worker” (LHW) was one individual with a BA degree currently doing a part time health education program. That person received additional training in the form of online training modules, as well as shadowing the institution’s palliative care team. Once trained, the LHW performed five tasks under the supervision of a registered nurse. The LHW provided the intervention group of patients with education on goals-of-care principles, establishing care preferences, identifying a surrogate decision maker, filing an advance directive, and encouraging patients to discuss care preferences with providers.

A part-time, blinded study was conducted at a single center, a VA medical system in California. Patients had either newly diagnosed stage III or IV solid tumors, or recurrent disease. The two groups were divided into an intervention arm (where they worked with their oncology team in addition to the LHW) and a usual care arm (oncology team alone), with over 100 patients in each arm. It is important to note 99% of the patients in this study were men, 77% of whom were Caucasian.

The primary objective was simply to see if the system could increase documentation of patient wishes and goals of care in late stage cancer. The usual care group had 17.6% and 24.1% goals of care documentation at 6 and 15 months post-randomization, while the intervention group had 92.4% and 93.3% at the same checkpoints. An advance directive was documented 25.9% and 33.3% of the time for usual care, and 67.6% and 74.3% in the intervention group. Secondary outcomes showed higher patient satisfaction, low emergency department utilization within 30 days of death, lower hospitalization rates within 30 days of death, higher hospice utilizations within 30 days of death, and decreased overall healthcare costs within 30 days of death in the intervention arm. And all of them were statistically significant. The authors point out cost savings did not translate to the groups when examined at 15 months post-randomization.

Interestingly, mortality rates among the two groups were nearly identical (57.1% for intervention and 55.5% for control). Some might expect the control group who utilized hospice at a higher rate within the last thirty days of life would have a significantly higher mortality rate, but this was not the case.

The knee-jerk reaction to this study is, “Let’s get a lay health worker trained!” It’s especially appealing when it was described that implementation costs (about $20,000) paled in comparison to rough estimates of net savings for the health care system (about $3 MILLION). It seems to me that this would be a legitimate feeling, especially considering that palliative care usage did not differ among the two groups. In other words, this LHW was able to locate people who did not need specialized palliative care to have these conversations, they simply needed someone to have them with. So often it is cited clinicians don’t have enough time during a regular patient visit, or think they have more time in the future to address these issues. That is, until often it becomes too late for a person to make their wishes known. Maybe this intervention really could be a game changer moving into the future of health care.

But before you go singing this from the mountain tops, I’d caution you to practice a healthy sense of skepticism. As was stated, the study population was fairly uniform (mostly white men in the VA system in California). A repeat of this study across hospital systems in other geographic locations would be extremely helpful to see if the results are reproducible and generalizable. But at the very least, I hope this helps spread the message that people might be more ready than physicians think to have goals of care and advance care planning conversations. Perhaps we just need to ask more.

Ben Skoch, DO, MBA, a Hospice and Palliative Medicine physician at the University of Kansas Medical Center. Outside of Family Medicine and Palliative Medicine, he enjoys most sports, black coffee, and most especially spending time with his wife and two adorable children.

More posts from Ben Skoch here. More Pallimed posts about advance care planning can be found here. 

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by Phil Rodgers

One of the most valuable things I’ve learned over my 15+ years as a palliative care physician is the importance of gratitude. I’ve learned this from my mentors, my interdisciplinary colleagues, my students, and—most importantly—my patients and their families. Each day that I remember how grateful I am for the privilege of doing what I do, is a better day both for me and for those I work with.

Today I am especially grateful, but for a different reason. Late this afternoon, CMS announced that it will begin reimbursing physicians and qualified practitioners for providing advance care planning (ACP) services to Medicare beneficiaries, starting January 2016. In the proposed Medicare Physician Fee Schedule (MPFS) for 2016, two new CPT codes (99497 and 99498) can be used to bill for more complex advance care planning conversations, whether or not any other services are also provided during the same encounter (detail on pages 246-7). These codes will also allow CMS to track delivery of ACP services, and their impact on care for Medicare beneficiaries.

Many Pallimed readers will be familiar with the growing body of published evidence that ACP leads to care more consistent with individual preferences, higher patient and family satisfaction, fewer unwanted hospitalizations, and lower rates of caregiver distress, depression and lost productivity. But most of you probably didn’t need to read those studies, because you see these deeply valuable, patient- and family-centered outcomes every day in your practices. You already know that capable advance care planning is essential to delivering the best care possible.

So I am grateful that CMS has now recognized this value. And they are in good company: the IOM’s report Dying In America: Improving Quality and Honoring Individual Preferences Near the End of Life cites payment for ACP services among its key recommendations; numerous private insurers and some state Medicaid programs already reimburse practitioners for delivering ACP services; and a broad coalition of ACP supporters—including specialty societies representing the vast majority of US physicians, the AARP, the American Cancer Society LiveSTRONG, the Alzheimer’s Association, the National Council on Aging, and many others—has publicly urged CMS to begin paying CPT codes for ACP services.

I am also grateful to the many HPM professionals and friends who submitted comments to CMS late last year in support of ACP services. Some of you may even have submitted in response to synchronized posts on Pallimed, GeriPal and AAHPM last December—and my gratitude extends to all three host sites for their generosity. Those comments really do matter, and CMS received overwhelmingly positive support for the ACP codes.

There is work yet to be done, as the MPFS proposed rule will not be finalized until late fall, and we’ll need to understand together how and when to use the new codes, so stay tuned in coming weeks and months.

But for today, there is much gratitude. I hope you feel at least some of it with me.

For more info, see the post on GeriPal by Paul Tatum on this same subject, with a different focus.

Phil Rodgers, MD, FAAHPM is co-chair of the American Academy of Hospice and Palliative Medicine Public Policy committee.

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by Katie Neuendorf

I try very hard to mean what I say, say what I mean and make sure that my actions and my words are in sync. I don’t pretend that this makes me unique in any way – I believe that there are many of us out there every day trying to live by this philosophy. Sometimes when we follow this philosophy, we can get others talking.

Luckily, I was given the opportunity at Cleveland Clinic to take this philosophy to the masses on April 16th, National Healthcare Decisions Day. And I’ll bet you could do it at your institution too!

There has been an interest at my organization over the last few years to make sure that patients are getting the type of care which they are seeking. One of the results of this interest was the creation of a task force to look into advance directive completion.

Enter palliative care! We needed to provide healthcare professionals with the education to know what these documents are, why they are important and how to find them. So I was approached with two main asks:

• Get as many Cleveland Clinic caregivers educated about Advance Directives as possible
• Help people to see that Advance Directives are about planning ahead and not about Death and Dying

After years of seeing April 16th advertised on Pallimed as NHDD, I figured this would be the perfect date on which to host a campaign! This brings me back to that initial philosophy. We decided that the best way to start talking about Advance Directives at Cleveland Clinic was to lead by example. It made sense that our caregivers would seek more complete information on AD if we made it personal to them. And we felt that the best way to keep the message simple was to start with Health Care Power of Attorney documents. Our campaign on April 16th is to encourage Cleveland Clinic caregivers to fill out their own HCPOA. Who better than the people working in healthcare to realize that life tomorrow may look completely different from life today? We’ve raised awareness about the event– caregiver to caregiver - we’ve created an online module for enhanced learning and we have the next event planned in our minds.

What I’m hoping the readers of Pallimed will take away is that I only had to propose this idea one time! It was fully supported and embraced by the institution. To underscore how supported this campaign is, our Chief of Staff will be signing his document at the event! I spoke to a group of Clinical Nurse Specialists about the event and before I left the meeting, they were asking if I could send references on how to have the conversation with their HCPOA. The woman who designed the AD online module told me that she will be coming to the campaign because she absolutely wants to have her HCPOA signed and a group of individuals from our media department said they were discussing the importance of advance directives through their lunch break.

So what philosophy are you living by that you can bring to the masses? You may be surprised by the overwhelming support that your organization may have for you.

Don't forget to check out Pallimed's advocacy resource page for NHDD 2015!

Katie Neuendorf is a Palliative Care physician at Cleveland Clinic in Cleveland, Ohio. She spends a significant portion of her time in education, half of which is devoted to her role as the Medical Director for the Center for Excellence in Healthcare Communication and the other half in her role as an inpatient palliative consultant.  Time away from work is happily spent with her husband and their 3 young kids enjoying the Cleveland Metroparks, playing all kinds of sports and repeatedly losing to a 4 and 6 year old at Connect 4.

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OK, you have finished your taxes, and now it is time to turn your attention to National Healthcare Decisions Day (NHDD), April 16th! Hopefully you have been well prepared and working on your organizations plan for NHDD long before today.  But just in case you have not prepared, we want to share some of our collected resources on advance care planning.

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by Emily Riegel, MD

With all of the marketing and promotion of February 14th as the day of love, it's a hard day not to notice. When I walked into my local grocery store the day after Christmas and saw shiny red hearts hanging from the ceiling over the huge candy display, my first thought was “Seriously, I’m not even finished eating all the Christmas candy yet!” You can’t make it through a day without seeing some kind of reminder that you should love someone, and that someone should love you. Candy and cards and jewels and smartphones all costing money and seeming perhaps unoriginal and empty gestures of love.

What can we do to show that we really, truly care about the people we love ?

What if we gave gifts that are deeply personal, cannot be bought, cannot be sold, and could prove to be invaluable for our loved ones?

What if, instead of buying a card written by a stranger and mass produced to be sold to thousands of people, we wrote our own kind of Valentine?

What if we engage in a new kind of Valentine tradition?

What’s the new tradition? What could this amazing gift be, you ask?

It’s something super romantic, maybe even a little bit sexy.

It’s…wait for it…

An advance directive.

Maybe even Durable Power of Attorney paperwork.

BOOM!

Yep, it is THE gift everyone wants this Valentine’s Day.

Imagine it. You and your sweetie are sitting down at your favorite restaurant. The lights are low. The violinists are meandering about. You look into her eyes. You say, “You know that I love you more than I have every loved or will ever love anyone else in this world. You are my beloved. You are the person who knows me best.”

You step up from your chair and, at her side, you take to one knee, as you hold her hand in yours.

You look in her eyes. Time stands still as you say to her, “No one else could ever be so important in my life as you are. Darling, will you make me the happiest man on earth, and will you please be my durable power of attorney for healthcare decisions and let me talk to you about my wishes should I ever be incapable of making my own medical decisions?”

She begins crying as she takes your hands, and she declares, “Yes! Yes, with all my heart!”

The two of you embrace as the entire dining room, all eyes upon you and your love erupt into cheers and applause. The notary public steps forward as you sign your names to the forms. The violinist begins to play that Peter Gabriel song, as her soft lips find their way to yours and you kiss.

Sigh.

Isn’t that the most romantic thing you’ve ever read?

It’s true, I may have a warped sense of appropriate gifts, which my husband will attest to regarding the time I decided that Father's Day was the best day to find out how he would want me to make decisions for him if he were severely burned and was going to have to lose all his limbs in order to have even a minimal chance of survival…but I think I made up for it when I wrote this love letter for him.

In all seriousness, though, why don’t we start to use Valentine’s Day as a day when we take time to sit down with our families and loved ones who need to know our wishes, and talk to them about what matters to us in terms of quality of life and healthcare? If this is the day when we are supposed to partake in acts of love, why not give one of the most loving gifts out there?

This is not to take anything away from National Healthcare Decisions Day, but, QUICK, tell me what it is? Are you able to immediately remember what the date might be? Are all the stores you walk into decorated with reminders for NHDD? Is your kid’s class having a party on NHDD, which you forgot to make cookies for until midnight the night before? I’m just saying, it’s hard to remember things, and it’s hard to remember what happens on which days, so if we link these conversations and discussions to a day that we can’t really escape knowing about, we are more likely to remember to do it, to make it our own tradition.

Some suggest this be done at Thanksgiving, or during the holiday season when families are together and these discussions can be held face to face with the ones you love. That’s a great suggestion, but not all families are eager to do because they fear it might lead to the ruination of the one day of the damn year when we’re all together and we love it.

So what do you think? Are you with me? What if we reclaim Valentine’s Day and make it a day that transforms our relationships and shapes our futures? Will there one day be a line of Valentine’s that feature a DPOA form or an advance directive as the text?

If you want to transform Valentine’s Day, here are some resources and sources for inspiration:
Caring Conversations
The Conversation Project
Engage with Grace

Commenters, feel free to add your own favorite sources for getting the conversations started.

Also, feel free to write your versions of Valentine Greetings related to DPOA/Advance Directives, etc.

Emily Riegel, MD is a palliative care physician at the University of Kansas Medical Center, where she sees both children and adults. No one will believe her but she actually knows how to arrange flowers.

Photo Credit: Emily Riegel cc

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by Andi Chatburn, DO

As a palliative care physician, The Conversation by Dr. Angelo Volandes is a book I want to see being read, passed along and read again in every coffee shop, book club and doctors’ lounge in my community. Volandes describes his new book The Conversation as a memoir, but in truth it is a “how-to” guide for having tough discussions in the context of serious illness. It is a “quick-start” for ubiquitous primary palliative care. Nothing in this book will be earth-shattering or revolutionary to the Palliative Care physician- it chronicles our every day experience. What makes Volandes’ book revolutionary is the way he makes it accessible to everyone.

Each chapter paints a different, yet familiar patient story: an elderly Italian matriarch with dementia, a professor of literature with brain cancer, a Hispanic gentleman with end stage Heart Failure, a young mother with breast cancer, the author’s own father who suffers a stroke. As Volandes recounts the story of his encounter with each patient, he reveals the unique social context and web of relationships that makes each Conversation different. He shows how there are many different approaches to The Conversation, and that there is no one “right road” but the same destination (77). He goes on to make all of this accessible:

• Describes the complex medical ethics concepts of proportionality, capacity and futility in a way that is easy to comprehend (5).
• Transforms complex heart failure physiology into common, accessible language, describing it “like a runner falling behind on a treadmill, the heart can no longer maintain the pace.” (55)
• Cites up-to-date national guidelines discouraging dialysis in the frail elderly (90).
• References the now classic NEJM article debunking the myth of effective TV CPR (79-80) and makes it accessible to a non-medical reader.

His easy scripting is a model for physicians young and old wanting to practice goals of care conversations asking, “Mrs. Sanchez, how was your husband these last few months? Was he doing the things he enjoyed, things that gave him happiness?” (56) Then shows the progression of The Conversation over several days and as different interventions come into play, including the honest aspects of moral distress created by being a keeper of the patient story when the proverbial “Daughter from California” changes the plan of care (59-60).

The second half of the book is a personal narrative on how Volandes started filming, creating, and studying the effect of the VIDEO Consortium (Video Images of Disease for Ethical Outcomes, see website acpdecisions.org) and his own reactions to his father’s stroke. The videos, which were were made to supplement doctor-patient discussions and to provide information for patients to make truly informed decisions about their care. “When patients have honest exchanges and have the tools necessary to understand their choices at the end of life, then they—not the health care system—remain in charge of decisions about how they want to live.” (137)

Half way through the book (62-63) and again in the four Appendices, Volandes provides a literal script for patients, families and providers to use when starting an uncomfortable conversation about wishes for end of life care. Appendix II provides a how-to guide for completing Advance Directives and Appendix IV is a brief list of online resources, including Ellen Goodman’s Conversation Project and CAPC’s public site getpalliativecare.org. Perhaps I will plant copies of this book in my local gym locker room and leave it on my neighbors’ doorstep.

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by Holly Yang, MD

Dear HPM colleagues,

For those of you who celebrate Christmas (and for those of you who are waiting patiently for the after Christmas sales), you'll be happy to know that there is still a chance to ask your friends and relatives for a gift, one they can get online without going to that crazy mall or fighting through traffic. Heck, give the present to yourself!

Ask CMS to pay providers for having advance care planning conversations. There are codes now (yay!), just no reimbursement (insert frowny emoji here).  BUT... the comment period to CMS is open until Dec. 30th, so if you are a procrastinator, not to worry. You still have time!

Ask your non-HPM friends to do it. It matters to them too! Do you think a primary care doc can fit in an ACP conversation into a 10-15 min. visit for their patient scheduled for another problem? Or an annual exam where they are supposed to do a full H and P, counsel against smoking, promote healthy eating, exercise, ask about gun safety, screen for domestic violence, and catch up with major events in a patient's life? What about the specialist who also has to fit it into a busy clinic day packed to the brim with scheduled and urgent, unscheduled visits? We love our patients. It's just that often it doesn't come to the forefront of conversation until it becomes an urgent issue or a true crisis. We need to have these conversations valued as "separately and identifiably" necessary part of providing high-quality, patient-centered care.

Besides, commenting isn't just good for our patients... all the cool kids are doing it. AAHPM, CAPC and AGS submitted. Paul Tatum, Kyle Edmonds, Laura Petrillo, and Alex Smith did too. Lots of people did. Patients, doctors, lawyers, academies, associations... you can too!

For those who like info short and sweet, I've already annoyed you. Quit reading and go here.
Push Ctrl-F on a PC (Command-F on a Mac) and search "99497" or "99498" to read what CMS is currently planning to do.

At the very top of the webpage click the "Submit a Formal Comment" button.

For the detail people, please see the HPM blog trifecta on the subject by my esteemed colleagues Gregg VandeKieft, Paul Tatum, and Phil Rodgers, which are very rich resources:
AAHPM
Geripal
Pallimed

For those who are more politically motivated or feeling a bit cranky from all the relatives in your house and need a way to vent, read Laura's Geripal post here.

Your opinion matters. It really, really does. CMS is listening (until Dec. 30th, that is...) No complaining that you don't get reimbursed for having advance care planning conversations if you don't avail yourself of this opportunity. Just think... wouldn't it be awesome to have one less barrier to patient-centered care?

It's Christmas Eve! The Elf on the Shelf is watching you to see if you are naughty or nice...

Photo credit: Alan Dow (used with permission)

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by Bob Arnold, MD

Case:
It had been a tough day rounding. We had four family meetings one after another. In one, the daughter walked out in the middle because she just could not hear any more. In another, the daughter made it clear that she just was not ready to think about the therapy not working. As we walked to our next meeting, the resident said to me, “Sometimes, I feel that you are too easy on them. Why do you not just tell them that it will not work? They need to understand that the therapy will not work.”

Discussion:
There is a common misperception that conversations about goals of care are always factual conversations. The doctor has to tell the family about the medical condition, the fact that current treatments are not working, and what, if any, options there are. The object of the conversation is to tell the information in a way so that family members “get it” and make “appropriate decisions." Doctors often think that families who do not understand this information are in “denial” or worse, have a financial motive for not understanding what is happening.

In my experience, this is rarely the case. Families often understand the information that the healthcare providers give—they just do not agree with it. (Given that we are giving prognostic information about what is likely to happen in the future, we cannot claim to hold the truth. We are probabilistically more likely to be more accurate, but what the future will bring is, until it occurs, unknown.)

Instead these conversations are about loss, sadness and anxiety. Loss about the current treatment not working. Sadness that the patient will not be able to achieve the goals they were hoping for. Anxiety about what the future might bring. Until these emotions are heard, acknowledged and processed, it may be hard for family members to move onto the next step—thinking about what their loved one would say given the new medical situation.


What data do I have for this belief? The family says things like “I know, but we cannot stop hoping,” or they just keep wondering if there is not something else that might work, or they hope for a miracle (which by definition means they know that what we are doing is not working). In these cases, the family does understand what clinicians are saying—they just do not agree with it, do not want it to be true or cannot imagine the consequences if our view of the future proves true. Trying to convince the family that our view of the future is the correct one often leads to conflicts where we are repeatedly giving bad news, the family keeps wondering or demanding something else, and we all leave unsatisfied. The family feels like we are giving up, and we feel like they “do not get it.”

There is another way to think about how to have these conversations. Think about them occurring on two planes—a factual plane and an affective (or emotional) plane. Typically we operate on the factual plane where we try to convince the family that our view of the future is the correct one. The problem is that what is happening on the emotional level precludes family members from cognitively processing and using this information. Psychologists know that we do not process cognitive information when we are emotionally flooded. In addition, when the information is too painful, one may actively resist acknowledging it because it is too painful (“denial”).

In addition, family members’ emotional reactions tell us about what is most important for them at this time. It gives the clinician a window into the things that the family is most concerned about, cares about and is worried about.

Finally, these emotions are normal when someone is being asked to confront or see something that they do not like. The fact that the family is having these emotions is, in fact, pretty good evidence that they do understand what you are saying, and they do not like it. Rather than trying to convince them on the factual plane that you are right, it will lead to a healthier relationship and better conversations if you meet them on the affective plane.

What does this mean for the clinician? It means, rather than giving information, attending to family members' emotions. It means acknowledging that “this is scary,” or that things are not going the way that they want. It means not fighting with them about the facts about what might happen and joining them on the emotional plane: This is not what we wanted to have happen, and, in fact, there is a part of us who, like them, wishes the better story would come true.

When people feel heard and appreciated, their emotions often decrease making them more able to think through the facts. They are able to think about situations that otherwise would be too frightening, scary or sad. They can begin to consider what their loved one would say about this new situation.

Conclusion:
I know this is a long answer to my resident’s question, probably more information than he or you wanted. So I will end with a suggestion: If it feels like the conversation you are having with the family is a battle, if it feels like they are not listening to you or do not want to attend to what you are telling them, or they keep asking the same questions, think about what the affective plane of the conversation is. Try to identify the emotions that the family is expressing and see if you can acknowledge or name the situation for them. Stop trying to convince them and try to join them on that plane to see if you can help move the conversation from a fight over who is “right” to jointly confronting the situation they are facing.

Acknowledgement:
Thanks to Debbie Seltzer for her editing and Tony Back, James Tulsky and Kelly Edwards (Vitaltalk.org) for helping me realize this and figure out how to teach about it.


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 small edits are made for clarity and to abide by Pallimed editorial standards.

Image: iStockPhoto