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by Lyle Fettig (@FettigLyle)

The suffering in our hospital is cloaked by tinted windows and shiny new steel, a serene architectural specimen which betrays the internal chaos of each person who experiences illness behind each door.

Even for people who work there, it is sometimes surreal to approach the building in its beauty with the dissonant knowledge of what can happen in all manner of disease in between the walls. It’s the perfect place to hide the devastation of a pandemic.

Were the death and agony in the streets for all to see, perhaps the choices that are obvious to you and me would be obvious to all. How could a person not take every step they could to prevent this ongoing calamity?

This is not the bubonic plague to be seen in the gutters but rather a plague silenced by the plastic of the tubes you have placed in many airways hoping that after days, Weeks, Months, those voices will be heard again, knowing that some will go unheard for all of eternity.

Speak the truth with the ferocity and compassion I always hear from you. Tell the world what you have witnessed. Then go back into it with pride that no matter how your message has been received, you can rest your weary head knowing you have done the best this world will allow.

Originally published on Twitter Dec 27, 2021

The suffering in our hospital is cloaked by tinted windows and shiny new steel, a serene architectural specimen which betrays the internal chaos of each person who experiences illness behind each door. /1

— Lyle Fettig (@FettigLyle) December 28, 2021

For more Pallimed posts about COVID.
For more Pallimed posts by Dr. Fettig click here.



Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.

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by Lyle Fettig (@FettigLyle)

I’ve been thinking about my role as a physician in responding to skepticism about a range of COVID topics, especially as we approach the holidays and all the tension about difficult recommendations to forgo traditional Thanksgiving dinners. As I think about our current situation, I can’t help but recall an encounter I had with a patient many years ago.

In winter 2008 after President Obama was first elected, I saw a woman in clinic who said she was disappointed by the election result. She cited a jaw dropping falsehood about what she thought his election would mean for healthcare, and especially healthcare for white people. I was frankly shocked when she mentioned falsehood, as I had not heard her specific concern in the runup to the election. She had no history of psychosis or delusional thinking. We spent a while talking about her concerns, and why her healthcare was secure.

I remember thinking, "where did she get this from and how could she believe this?" The belief clearly had a racist element underpinning it. I felt powerless, as I couldn’t fix this person’s belief. But through a mixture of trust built on our relationship and exploring her underlying concerns, I think she ultimately listened to my reassurance that she would not lose her Medicare. And regardless of what she believed, it ultimately didn’t matter. The truth was the truth. Her Medicare coverage wasn’t changing, and this truth would bear out for her regardless of her belief.

Don't we have moments like this all the time, when patients bring up shocking beliefs/myths/etc about how the world works? Maybe not every day, but it happens a lot. People are not always well informed and have a mix of beliefs, born out of individual experiences, family background, and culture. “Groupthink” is a part of that culture.

When people bring up myths about their illness or healthcare itself, we usually deal with it one on one with the patient. We explore underlying concerns and try to address those concerns as best we can, either through communication or action.

Dr. Fauci said he was "stunned" that so many see the pandemic as "fake." I've also heard colleagues express disbelief about how lackadaisical many in the public are.

But if you've been practicing medicine for a while, haven't you had enough people individually bring up wild ideas about how the world works to say, "yeah, actually I'm not all that surprised." The piece that's hard is the group think, and that we have so little control over this groupthink, right here in front of us. So while I’m having a bit of disbelief, it isn't the main feeling I've been having. The main response is a bit of helplessness.

I feel helpless in the face of so many who aren't taking this seriously, and I'd guess many of you do, too. The only way forward for most of us is one patient at a time. Sure, those who have a megaphone should continue to blast accurate and understandable public health messages. It's really important. The rest of us can amplify these messages.

Just remember that you've been here before with patients' mistaken beliefs. One on one with patients and their families is where healthcare professionals have our greatest agency. We have the ability to understand explanatory models, motivations, and concerns.

None of us would dispute that public health oriented restrictions come with hardships for many. When patients (or loved ones) express skepticism about public health guidance, resist the inclination to reinforce what you know to be true. By now, they have heard it all before! Explore how following public health guidance might be impacting their life in other ways (social isolation, loss of income, etc). This is what the restrictions actually mean for most people. This is harder to accomplish on social media or with family and friends, but you could give it a try there, too.

Explore how they are talking about coronavirus and the restrictions with others around them. You'll hear about the groupthink. To go against the grain of one's in-group feels like a threat to their identity (even if the vast majority of the time, it isn’t a threat in that way). You will also hear a great deal about how families and friends are working together to overcome the conflicts that are inherent to trying to navigate these difficult times. Celebrate the work they are doing to do this when this happens! I’m definitely seeing this a fair amount in our palliative care clinic with our seriously ill patients and their families, who remain highly motivated to stay away from COVID. People have been very creative, having drive-by birthday celebrations at homes, etc.

IF you can figure out how public health guidance impacts a person in potentially negative ways, then you can acknowledge that (and sometimes work to mitigate with help of social workers, etc). And then they may be more open to hearing you speak the truth about prevention.

Don't expect them to change their mind instantly. Most of the impact of health care professional/patient communication comes after a visit, and they may never tell you that you helped change their mind. As with all other healthcare, "They don't care how much you know until they know how much you care." This maxim remains true with pandemic communication. If you’ve spoken your mind with compassion and respect, you’ve done your job, even if you can’t ultimately control what they do.

The pandemic has “stretched” my ability to separate what I can and can’t control. As we head into what looks like a dark winter, I hope we can all continue to find the light of our souls: Our ability to foster genuine human connection in the hardest of times.

P.S. Yes at the beginning of the pandemic I said we were going to war with coronavirus (see previous post). Do I regret it? Yes and no. If I didn’t sorta regret it, I probably wouldn’t be bringing it up right now, as I might be the only person who actually remembers this. I don’t like battle metaphors, I avoid them in practice unless patients bring them up. And I don’t want to be at war. So consider this post a bit of penance for “going there.” But I’ll admit to having mixed feelings about many different metaphors, even including battle metaphors. I think the downsides of battle metaphors mostly outweigh the upsides, but I can’t help to still think of it when it comes to the virus. So I’ll continue to wrestle with it, and accept non-violently any judgement silently cast by those who read my previous post. I get where you’re coming from, trust me. :)

Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.

Note - this post originated from a thread by Lyle Fettig on Twitter.

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By Lyle Fettig @fettiglyle

Check out the Pallimed COVID-19 Resource page here. - Ed.

I love the letter co-published by Pallimed and Geripal about COVID,and you should read that too. As an erstwhile (for now) Pallimed contributor, I thought I'd toss in my two cents with some additional thoughts/reflections based on week 1 of preparing for the COVID pandemic as a palliative care physician.
Over the last week, I've operated mentally in most of these lanes:

1. Primary prevention and public health: Through extensive advocacy for social distancing and widespread testing. I have talked about it with my patients and my own family and friends. This also included persistently calling governmental officials, pulling my sons out of school, writing letters, and re-entering social media after an over two year hiatus

2. Assessment of patients with suspected COVID-19, like a person I've been following for 4-5 years who had pneumonia last year and called with complaint of a cough. The usual clinical reasoning of the scenario was complicated as I tried to balance the desire to get him evaluated with the public health considerations.

3. Management of mildly ill confirmed cases and mitigating the public health risk. Haven't dealt with this yet. Just waiting for the first call on one of my high risk clinic patients to have this. I know that even if they have mild symptoms, they might progress to lane 4. It feels unfair to think that an emerging infectious disease would take any of their lives.

4. Management of seriously or critically ill patients who might die. We've spent a lot of time with our critical care colleagues over the last week, swiftly trying to figure out what we would do with a "surge" and how it would change our usual collaboration, which is robust and well established. Enter the age of inpatient teleconsults, including a first: A surrogate asking me if he could email me a photo of himself so I could see what he looks like.

5. Worst case scenario of resource allocation issues: We hate talking about this, but it might happen, and we have to face it and be prepared.
It's dizzying to think about all of these lanes, on top of the usual issues our patients and teams face. Lane 4 and 5 are scary enough to serve as motivation to put a lot of attention into lane 1. Even though our ICU is a place with plenty of windows and sunlight, for some reason, I imagine lane 4 and 5 as a dark windowless place without walls, just a massive ward full of despair. It's enough to move any of us to tears and action.
I've found it helpful, in conversation about the pandemic, to identify which lane we are talking about at that moment, especially with respect to lane 4 vs. 5. In lane 5, there will be factors out of our control that determine whether patients get what they need. Routine palliative care practice (fueled by extra coffee and fewer administrative meetings) will serve our patients and their families well. Under any circumstance, we will do what we can to support shared decision-making, even if there are factors out of our control (as there always are).

Here are a few thoughts as we enter the new week:

Let's keep advocating in lane 1 while we prepare
It's surreal to see cars on the road and just feel, well, disturbed. After I finished pumping gas today, I wiped the handle off with Chlorox and went onto the next pump to wipe that one down too. (What have I become?) We are still woefully under testing for SARS-CoV2. Still some people think this is a nothingburger. Continue to educate patiently and figure out what's hardest for them about social distancing, and empathize. I'm struggling with it. I've been avoiding touching my family, changing clothes in the garage before entering, etc. It's for the birds.

Remember the concept of mortality salience and terror management theory
I'm scared. For myself, for my own health. It's tempered by probabilities, but you know, anecdotes. I'm scared for my family's health, and my parents are hunkered down, not even allowed to touch their mail. For the health and comfort of my current patients and their families. For the suffering that our new patients in this time period of isolation. Loneliness is already an epidemic, and the pandemic will amplify this. "Comfort and company" is essential to the end of life experience, as one of my mentors Greg Sachs likes to say. The thought of having a large number of people dying in uber-isolation, swimming in PPE, without their families.

I know I'm not alone. I've talked to colleagues about the three levels of fear: for our patients, personal, and professional. Everyone is walking around with extra fear.

What does evidence for Terror Management Theory suggest about what this will do to us? When people are confronted with their mortality, there's evidence to suggest they act in heightened ways consistent with their own values. (There was the famous study where judges handed out worse punishments for criminals after being reminded of their own mortality) It may make us more protective of those values as well. In stressful times, there's more likely to be tension about little things. Pause and make sure you're not actually on the same page about the values. In times like this, there may be uncertainty about the best means to accomplish certain goals. It helps to solidify agreement about the goal or value itself. "What we both value is..." This is the VitalTalk "align" statement from REMAP. It works for us as well as our patients and families.

Don't let perfection be the enemy of the good

"Be fast, have no regrets."

Dr Michael J Ryan says "the greatest error is not to move" and "speed trumps perfection" when it comes to dealing with an outbreak such as #coronavirus.

Get the latest on COVID-19 👉 https://t.co/HMPNwaVk37 pic.twitter.com/wDa7XOMw8Q

— Sky News (@SkyNews) March 13, 2020

Remember the secret sauce of palliative care

What's the secret sauce? There is more than one ingredient, but in addition to all the skilled professionals from various disciplines who bring compassion and persistence to care of individuals, I think the sauce is Relational Coordination. Timely, accurate, frequent, and problem solving communication that is oriented around shared goals, shared knowledge, and mutual respect. Lean on these in the days and weeks ahead: With teammates, colleagues, hospital leaders, and most of all, patients and families.

Relational coordination defines the collaboration between palliative care and critical care at many places, and I can't imagine my career without this collaboration. I have a deep admiration for the critical care physicians I work with, many who have become friends over the years, sharing in the care of some of our sickest and most vulnerable patients and their families. Much has been written about avoiding war metaphors (with cancer and such), but I'm setting aside my pacifist ways for this virus. We're going to war now, locked arm and arm against this tiny alien and the cascading effect on individuals and society. The relationships built between colleagues will help us find our way through.
Let's save as many lives as we can and palliate this broken world along the way.

Flatten the curve, but when it hits, charge up the hill.

Source for image 1: Meredith MacMartin
Source for image 2: https://heller.brandeis.edu/relational-coordination/

Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.

For more posts on COVID-19, click here.
For more posts on Emergency Preparedness, click here.
For more posts by Lyle Fettig, click here.

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by Lyle Fettig

When debriefing after a difficult communication encounter led by a fellow or resident, I’ll often start by asking the trainee, “how do you think it went?” There are times when I thought the encounter went very well, yet the trainee leaves the room with a worried look. Perhaps the trainee clearly explained the medical facts, demonstrated ample empathy, and carefully talked about the next steps, so I’ll be a bit surprised when the trainee says, “It went horrible.” I’ll ask why, and I’ll get a bemused look in response. “Because I made the patient cry,” the trainee might say. Usually, when this happens, the trainee knows that it was the serious news that made the patient cry: A change in condition, a revelation about prognosis, etc. Deliberate reflection on skillful communication requires some understanding that while patients may respond differently to various communication techniques, we are ultimately not responsible for the patient’s emotional response to serious information. Even if giving the information was the ethical and pragmatic way to proceed, the physician is at risk for experiencing strong emotions that mirror those of the patient’s. The response of the patient and the physician’s experience of observing the response might make some second guess whether they have approached the conversation skillfully, even when they have.

“Attending: Medicine, Mindfulness, and Humanity” by Dr. Ronald Epstein, professor of family medicine and palliative care at the University of Rochester, is all about how physicians cognitively and emotionally process not only moments like this one, but also the more routine moment to moment emotional roller coaster of the practice of medicine. It’s a practice that is rich with cognitive complexity but always mingling with emotional intensity: Anxiety over making correct diagnoses or missing something. Frustration about electronic medical record systems. Helplessness when faced with symptoms we cannot explain, or sometimes cannot alleviate adequately.

We all experience these thoughts and emotions in our own way, and all develop methods (sometimes adaptive, sometimes not so adaptive) to respond to our inner experience. Dr. Epstein blends a mix of his own experience (which he describes with vulnerable humility), the experience of colleagues, and a description of some of his own research (example here) as well as related research in neuroscience, decision-science, and resiliency. The result is a readable, thought-provoking, useful, and comforting book that I’d recommend to any physician, or for that matter, any health care professional.

The book starts with a chapter on mindfulness in the practice of medicine and then a chapter on the related concept of “Attending” which describes our human ability to attend to a limited number of stimuli at once, leading to inattentional blindness (which none of us are immune to), and why this contributes to the challenges of medical diagnosis and management as well as why it may be so hard for us to recognize the experience of the patient at times. Even for people who are highly empathic, there’s still a risk of losing sight of the other person’s perspective when you’re lost in clinical reasoning, etc. He then further expands the discussion to the topic of uncertainty, and how we in medicine are certainty junkies, which brings with it a risk for crowding out curiosity. And that has negative implications.

Palliative care clinicians will especially appreciate his reflections on the concept of “presence” or “bonded resonance” in which two people are in touch and in tune with each other. Quoting philosopher Ralph Harper, he talks about the important role of presence in “boundary situations,” times of vulnerability and uncertainty. Philosophers and scientists alike have explored this resonance, and he describes two seemingly competing, but perhaps complementary, theories for how this happens. The first is “theory of mind,” where it’s thought that we theorize what might be going on in other’s minds, and might occasionally verify in communication if we understand their thoughts and feelings. The other theory is “embodied simulation” which posits that we “relive in our own bodies and minds the actions and presumed intentions of the other. He states that the current body of research comes to an intuitive conclusion: our cognitive and emotional lives are shared psychologically and neurobiologically, and boundaries between those sharing in presence are blurred.

This is a wonderment, and it reframes the feeling of dread that often goes along with breaking bad news. Yes, it's the information that makes the patient cry. It's information that the physician shares from his or her own mind to the patient's, who reciprocates with sharing emotion back to the physician. Although the physician has not "caused" the bad news, perhaps the feeling of responsibility for the patient's emotions stems from the blurring of boundaries?

I eagerly read the chapters on “Responding to Suffering” and “The Shaky State of Compassion” and agree with his supposition that while training in empathy is important, it only goes so far and there’s a real risk of emotional contagion- taking on the patient’s distress. Describing research about compassion, he describes “exquisite empathy” or compassionate action that may relieve the patient’s suffering and in concert, release the emotional tension that the clinician experiences.  (I would include plans that come about after careful goals of care discussions as "compassionate actions", and even the process itself, that involves a lot of sitting with patients and grappling.) The good news is that there is growing data that compassion can be cultivated through practices such as loving-kindness meditation.

The book closes with chapters on resiliency in both the individual clinician and in the healthcare system with compassionate suggestions for his colleagues that don’t aim to “fix” the problems of our broken healthcare system, but do aim to help us build capacity to respond to it. Everything he writes about complements, integrates with, and bolsters important communication skills commonly taught by palliative care clinicians.

You’ll have to read the book to see some of his suggestions, but I’ll leave this review on a personal note. I personally am not immune to burnout and anxiety, as well as occasional dysthymia and rarely, depression. I remember when I was just starting, our team’s chaplain asked me to notice my breathing in the middle of a visit with a very anxious man who was in pain as well. To my surprise, I was holding my breath, perhaps an embodied simulation of what I witnessed. I think of the multitude of simulations we process each day, with patients, their families…and with colleagues, and this is a timely book for our field and for medicine in general.

I think this book offers a framework to consider how we might become more resilient, yet I recognize that someone out there might be reading this right now in the midst of a personal crisis. If that's the case, I could imagine that hope might not come as easily as you would want.

So, I have one last heartfelt note for everyone, but especially for my physician colleagues. It comes from the experience in the past couple of years of losing a physician colleague to suicide.

Recent research indicates that burnout in HPM physicians is something we should pay attention to carefully.  It's an issue in medicine more broadly. Physicians have higher rates of burnout, depressive symptoms, and suicide risk than the general population. An estimated 300–400 physicians die by suicide in the U.S. per year.  Don't wait until a crisis point, it's ok to think of it as a quality of life issue!  Seek help if you are suffering. You may feel shame, but that's part of having depression and not because of who you are.

There are likely resources available to you locally at your own institution or in your community. If you are in crisis, you can also call the National Suicide Prevention Lifeline at 1-800-273-8255. There is no shame at all in reaching out- we need you in this world.

I'll leave everyone with a loving-kindness meditation:
May you be filled with loving kindness...
May you be held in loving kindness...
May you feel my love now...
May you accept yourself just as you are...
May you be happy...
May you know the natural joy of being alive...

Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.

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by Lyle Fettig

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by Lyle Fettig, MD

Let me tell you about a palliative care colleague.  His office is next to mine.  If both of our doors are open, I can hear his phone conversations.  Occasionally, I'll recognize when he's having a challenging conversation.  My ears especially perk up when the challenging conversation is with a physician colleague.  I cannot detect it by the volume, pitch, or tone of his voice.  He varies all of those features as he would in normal conversation even though the topic is more tense.

Here's what I notice as I listen:

• He uses more open ended questions than usual, aiming to clarify the other doctor's position and concerns.
• He uses more silence.  I can hear him patiently listening and never interrupting.
• I hear statements of appreciation for the role the other physician is playing in the patient's care and/or the relationship the physician has with the patient.
• When there are areas of disagreement, he makes clear statements of the intention which underlies his position.  The intentions are almost uniformly statements that represent interests of the patient.  
• When he makes suggestions, he doesn't represent them as a matter of doctrine. 

I learn from listening to him.  He turns the conversation into a "learning conversation."  Does this approach always resolve the issue to his satisfaction?  No. But it frequently does.  And in the process, he's building relationships with colleagues who might otherwise be skeptical.  If we talk about these challenging conversations, he always seems to give the other person the benefit of the doubt regarding their intentions. He doesn't just take this approach with challenging colleagues though.  Whether it's our interdisciplinary team, our fellows, or a junior medical student, he consistently brings these ingredients.  

Humble and Curious

The first adjective which comes to mind when I think of Atul Gawande is eloquent.  The masterfully written Being Mortal would not have been possible without his eloquence.  After reading the book, watching the Frontline episode, and now hearing him at the AAHPM Annual Assembly, humble and curious also rise to the forefront. Gawande recognized he could improve his own skill in approaching conversations with seriously ill patients.  He sought out those who have expertise, namely his palliative care colleagues at Dana-Farber/Brigham and Women's Cancer Center.  And he exercised his curiosity to learn.

During the Q/A at his plenary session, Gawande was asked:

"Do you ever get ANGRY at physicians who torture their dying patients? Sure they weren't "trained" in communication, but they are human."

Gawande answered by reflecting on his own imperfection.  (People in glass houses shouldn't throw stones.)  He then framed the challenge that is before our field of hospice and palliative care:

"The most interesting problems are those in which good people do bad things."*

Those physicians who do this poorly ARE only human, after all.  Most (or should I say all?) grew up in a culture where death is the enemy, it's hard to talk about, and then went to medical schools where they were exposed to a hidden curriculum which reduced their capacity for empathy.  We may feel angry when things go poorly and we can't fix it, but it's also important to make sure we're pointing our finger at the right problems.  The "torturing physician" likely has inadequate skill or capacity to approach the situation fruitfully, and may lack the  systematic infrastructure to make up for the inadequacy.  We only see the end result of a culture and healthcare system not designed for proficiency in this area.  The physician isn't a bad person- more likely quite the opposite.

Commandment #8 of the Ten Commandments for Effective Consultation is "Teach with Tact."  When describing this commandment, the oft-cited original article mostly focuses on how to leave recommendations. The authors give solid advice about providing references of evidence to the primary physician in a timely manner. "The patient may quote the article to the primary physician....few physicians enjoy expanding their horizons in this matter."  Part of our humanity is the desire to always fulfill our physician role as expert, even when we aren't always the expert.

We can hope that other physicians will naturally follow Gawande's lead and use their capacity for humility and curiosity to learn from our field.  Make a list of those surgeons, oncologists, critical care specialists, hospitalists and others who exhibit these capacities.  You may be surprised how long the list already is.

What about those that don't exude humility and curiosity?  What about those times when we feel angry?

Bob Arnold provides the following wise advice:

"The learning point is how to listen respectfully, assume they know something about the patient, and be humble in my suggestions,” Arnold says. “We need to be as kind to our primary clients, the referring physicians, when they don’t do what we think they should, as we are toward patients and families who make different choices than we would. If I can ask myself why a smart, hard-working doctor would want to do things differently than I would, I can be a better advocate for the patient and help the doctor provide better care for that patient."  

We need to carefully consider how to teach with tact.  We need to skillfully teach with humility and curiosity, gently guiding rather than brashly imparting.   Remember what Chester Elton said during his Thursday plenary session as he quoted his father, "You be nice to everybody, because everybody is having a tough day."  Empathy isn't just for our patients.  Horizons won't expand through lambast and lecture.

My palliative care colleague probably sounds familiar to you.  You hopefully have colleagues who exhibit the same humility, curiosity, and equanimity.  And not just them.  You too.

Look for opportunities to combine your expertise in palliative care, your desire to help others do better and humility that you can always learn new ways to teach others tactfully.  My colleague recognizes this and has signed up for a VitalTalk Faculty Development course this spring.  I've done this in the past and highly recommend it.  The facilitation methods are grounded in humility and curiosity. Also, keep your eyes out for the work being done by Gawande, Susan Block, and others at Ariadne labs.  It's exciting stuff.

I recently taught a communication course with a group of cardiology fellows using VitalTalk facilitation methods.  One of the very skilled fellows in my group came up to me a the end of the course yearning for even more feedback than what she received throughout the two day course. 

Atul Gawande's eloquence may not be matched by many but he is not the only one who is humble and curious.  This brings me hope.  

HT to Patrick Clary for helping me get this quote right via his Tweet. 

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by Lyle Fettig, MD

You meet a 29 year old man with a history of Diffuse Large B-Cell Lymphoma.*  Palliative care was consulted after he presented to the hospital with lower extremity weakness and was found to have extensive new epidural spread of his disease as well as progression of disease in his chest and abdomen.  He was just diagnosed five months ago.  He started chemotherapy with hopes that he'd respond well enough for consideration of a stem cell transplant.  With documented progression of disease, it has become clear that would not happen. 

He'll die soon.  You look at him, his wife, and two year old daughter and wonder why.  The idiomatic thought springs forth naturally, "What did he do to deserve this?" even if you're consciously able to say "this isn't his fault, he doesn't deserve any of this."

Maybe smoking is linked to lymphoma?  Maybe not.  And anyway, he never smoked. Even if he did, how many 30 year olds who smoke succumb to a similar fate?  A tiny percentage. He occasionally drank alcohol, but never did any other drugs.

Maybe it's some other environmental exposure?  Maybe he was exposed to something at work?  He has worked at a facility that makes medical supplies.  Hmm.  No obviously known exposure risk.

There has to be something.

What drives the desire for an explanation?  The answer to this question is complicated, but here's one factor that may drive the desire for many:

The just-world hypothesis.

People who strongly hold this hypothesis assume the world must be fair and may be more inclined to believe that if something bad happens to you, you must have deserved it somehow. This hypothesis sees suffering and concludes that people who suffer must be the kind of people we disdain.  If the world isn't fair, what bad things might happen to me? If unfairness like this exists, it's scary to confront. One way to avoid this fear is to assume fault of the person who is suffering.

You know the patient cannot be blamed for his lymphoma.  Maybe it can be explained by genetics, a quirk of cancer biology. But what about the 70 year old woman who has lung cancer after a 120 pack-year history of smoking cigarettes?  There's no doubt about the relationship between smoking and lung cancer.  The dangers of smoking continue to be clarified and every public health campaign that reduces smoking rates is a good thing.

Is the non-smoking blamer reassuring himself about his own fate?  "That couldn't happen to me- I have never smoked."  Tobacco contributed, no doubt. Can the blamer, armed with the just-world hypothesis, more easily ignore the fact that up to 24,000 people die in the United States from lung cancer every year without having smoked?

In an unfair world, try not to blame the dying person or try to dispute the person's experience of unfairness.  The lifelong smoker may point to someone who lived twenty years longer while smoking.  It's true that smoking is bad, people should stop for their health, and still some people skate through in spite of it.  So it won't seem fair to many who don't.

Watch out for this bias.  If you have feelings of blame (even if unspoken), examine what the source of those feelings might be for you.  Be gentle with yourself if you discover it might be in response to fear of an unfairness which is universal in potentiality.  Examine your own fears.  Don't let them obstruct a compassionate response to the experience of loss and grief which is a source of the patient's experience of unfairness. 

Aim to non-judgmentally provide safe passage and support to all until the end.  The world will be more fair as a result.

*Any resemblance to real life patients is purely coincidental.

Photo: Justice via Shutterstock

Lyle Fettig is a palliative care doctor in Indianapolis where he lives with his wife and two boys, both who love Funky Bones at the IMA 100 Acre Park. 

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Empathy plays an important role in all of healthcare communication, but it's especially heightened when clinicians are working with patients with serious illness and their families.  

Journal of Palliative Medicine published an article by Vital Talk's Tony Back and Bob Arnold recently about the role empathy can play in the delineation of goals of care for seriously ill patients.  Empathy without any specific action is valuable to the suffering person.  Merely being understood often times has some ameliorative impact on the suffering person and fosters a therapeutic relationship, even when some problems cannot be solved.

1. See affect as a "spotlight"-  be curious about the reasons for the emotion.  Don't assume sadness is exclusively about dying.  The first step is merely recognizing the spotlight, even if it's not patently obvious where it's shining.  
2. Use the affect to connect with the patient- bring it out in the open to demonstrate for the patient that you are noticing it.  They recommend doing this before moving on to figuring out what is being spotlighted.
3. Read between the lines to infer what is important- listen for cues that suggest a deeper concern or narrative that isn't being openly talked about.  The evidence here will be incomplete, and the clinician needs to hypothesize and test the hypotheses with the patient.
4. Develop action plan jointly with patient to address the need.  The patient needs to be committed to the plan, and when a patient is committed to action that helps them address the goal, the process is defined as a success.  

Image: FracFX "In the Spotlight"

The "goals of care" concept is already patient-centered and the described process adds to the patient centered-ness of it.  You don't automatically know what the patient's affect is about.  There's some guesswork.  But you're not going to move to an action plan until the patient confirms you've got it right AND that they are committed to the plan.  Step 4 suggests a role for patient behavior change in the goals of care process:  What can patients do to help themselves achieve important goals? In the face of serious illness, patients frequently feel like they lose control over activities in their life. Exploring emotions that might arise from this loss can help us figure out how to help patients restore some semblance of control. 


Back AL, & Arnold RM (2014). "Yes it's sad, but what should I do?" Moving from empathy to action in discussing goals of care. Journal of Palliative Medicine, 17 (2), 141-4 PMID: 24359216

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It is really hard to see a randomized controlled trial conclusion that does not support your previously held view of medical practice or education.*  Yet it's vitally important to pay close attention when this happens, and try to deeply understand what's going on so you can change your practice, if necessary.  So I'm here to pay close attention (and be rather long-winded in the process).

Earlier this month, JAMA published an RCT conducted by Curtis et al. which evaluated the effects of a communication skills intervention for internal medicine and nurse practitioner trainees on patient and family reported outcomes.  The communication intervention, which was developed by the educators at Vital Talk, is popular in the palliative care community.  It's perhaps most commonly known as the intervention used in Oncotalk. At the core of the intervention is high fidelity encounters with a simulated patient or family.  It's an intervention which has been shown to help trainees gain skills related to conveying empathy and talking about serious news/goals of care, etc.  A separate publication documents skill acquisition in the JAMA RCT's intervention group.

But the JAMA RCT took it a step further with an attempt to determine if the educational intervention would positively impact patient-centered outcomes. 

In short: No benefits found in this study.  No increase in patient, family, or other clinician rating of quality of communication surrounding end of life care.  No improvement in mental health outcomes.  In fact, patients exposed to the intervention group's trainees experienced a small but statistically significant increase in depressive symptoms.  Let's take a closer look at the purpose and methods of the study.

What's the purpose of the educational intervention?
The educational intervention is designed to give trainees skills necessary to conduct pivotal conversations- to ensure that patients and their families understand where things stand medically (and where things might be going), empathize and provide support when the news is serious, and to align treatments with patient values and goals.  While I'm not familiar with the specific simulations used in the intervention, from other experiences with this method, the simulations usually feature patients who are at a pivotal point with their health.  A new or relapsed serious illness. Worsening of a condition, indicating that treatments aren't working very well. A transition to the actively dying phase. 

Was patient selection appropriate for this study? 
All of the patients included in the study had serious illnesses (25% outpatients and the rest inpatients), and one might anticipate that each patient would need to have conversations about serious news, goals of care, and end of life care at some point along their disease trajectory.  But at every visit?  Likely not.  Some of the skills taught could be applied at any visit, but would the full benefit of these skills be felt if the patient was stable without troubling new issues?  Could patient stability reduce the importance of applying these skills at many of the visits?

So, how many of these patients were actually at a pivotal point in their disease trajectory during the study encounters?  We don't know, exactly.  Here's what we know:

• Patients in hospice care were significantly less likely to return surveys (only 26% of patients in hospice care returned surveys).  We don't know how many patients in each study group were in hospice or on the verge of hospice referral,which represents one of many possible pivots in a patient's health and care.
• When there was documented communication about end of life issues, patients were significantly less likely to return survey (34% estimated return rate)
• Families of the 16% of patients who died during a hospitalization were dramatically and significantly less likely to return the survey (a measly 29% when the patient died vs. 78% for families when the patient survived hospitalization).
• Among respondent patients who rated their health status as "poor", quality of communication scores were higher in the intervention group.

In this study, those are about the best proxies (albeit insufficient) for whether patients were at a pivot point in their disease trajectory when they encountered the study trainees.  Among patients, there was a 44% response rate and a 68% response rate amongst families.  But response rates were even lower in the patients and families where these communication skills might prove most useful.  Table 2 compares the study and control group with respect to many variables, including how many patients died in the family evaluation group, for instance.  The table probably should have included more of these "potentially at a pivot-point" variables. 

We have no idea what the subject of the conversation was during each visit. Perhaps the control group had sufficient communication skills to navigate routine patient visits and achieve scores comparable to the intervention group.  Reviewing the QOC tool, many of the skills on which patients/families were asked to evaluate trainees are basic skills (making eye contact, etc). Maybe there were enough routine visits to drown out the pivotal conversation visits in the study.  There's no way to know. 

Confounders for the measurement of trainee skill
Another variable which was not reported was the timing of when patient/family/clinician evaluators filled out their surveys.  It's entirely possible that by the time the evaluations were filled out, patients and families might have remembered the face of the trainee.  However, as time elapses from the visit, recall bias likely only grows.  Think of the number of factors which could impact the rating- the plethora of other clinicians the patient could have seen during the same hospitalization or in the interim. One inclusion criteria for the study was patients who had palliative care consultation, but it's not known how many of the patients received this.  You could imagine that being a confounder for patient satisfaction! Also, consider the conflicting messages patients and families receive and the illness experience itself as other confounders.

The depression result
First off, it's not clinically significant by the pre-defined minimial clinically significant difference of a 5-point change in the PHQ-8.  Granted, it was statistically significant, with a covariate adjusted 2.2 point increase between the groups. 

What to make of this clinically insignificant increase in depressive symptoms?  We know sadness comes with some of the messages we have to give to patients and their families.  But none of us want to make someone more depressed, if we can help it.   

PHQ-8 was measured at a a single time.  And we don't know when that was, and whether timing varied for some reason between the intervention and control group.  But let's assume measurements occurred at exactly the same time in each group. 

We have empirical evidence to suggest that the elements of grief have "average" trajectories, with depressive symptoms being an expected element of that grief.  Assuming that trainees in the intervention group were having more end of life discussions (a leap, because we don't know for sure), is it possible that the "arc" of the anticipatory grief experience was modulated somehow?  More depression earlier on, with greater acceptance to come when the control group was hitting the peak of their depression? 

This is merely a hypothesis.  But I think simultaneously while we ponder the possibility of harm, alternative hypotheses need to be considered as well.

How might this mesh with another highly regarded communication intervention trial?
Previously, Lautrette (and Curtis) et al. demonstrated the effectiveness of a communication strategy at reducing depression, anxiety, and PTSD symptoms in bereaved family members three months after the loss of a loved on in an intensive care unit.  One of the core interventions was a structured family meeting that involved clinicians using the VALUE mnemonic.  While this particular mnemonic was not central to the educational intervention in the JAMA study, the intervention helps trainees gain the skills necessary to accomplish the goals central to the mnemonic.  Why the difference in outcomes, then?  I hypothesize that it comes back to patient selection.  All of the patients in Lautrette were clearly at a pivotal point in their care when the intervention was applied. 

Anecdotes remain powerful 
A critical care fellow sends an email noting that after an impromptu late night family meeting, the nurse commented on how smoothly the meeting went and the resident told her he hoped he could communicate like that one day.  Another fellow sends a text with a report that in a difficult conversation, he made a statement admiring the care the family gave to the patient, and the emotionally charged family calmed down, becoming more able to focus on the difficult conversation at hand.  You observe one of your fellows find a new way to align herself with a patient asking for treatments that won't be beneficial, and she remarks afterwards about how she wasn't doing that just a few weeks before, and how useful she has recently found the new technique.

All of the above fellows participated in a communication course conducted using the Vital Talk teaching methods studied in the JAMA RCT.  Multiple studies (including the recent JPM study linked with this RCT) have now demonstrated change in behavior from this intervention.  It's possible that the change is not long lasting.  If we were to set aside some of the methodological issues of the JAMA RCT and believe the conclusions (no improvement in patient outcomes), it's possible that the trainees didn't have adequate reinforcement to change their behavior permanently.  It's also possible that some of the anecdotal success comes from viewing this as an iterative process with high level learners who are a different audience than the intervention group of the study.  For more on that and further commentary, here's Drew...

Like Lyle, I have been trained in and use the techniques used by the Oncotalk/Vitaltalk crowd, and, via first-hand experience, strongly believe they are effective in improving the quality of communication. I watch communication skill acquisition happen rapidly, in a way that is nearly giddying (as an educator) to watch. In my own fellows, I perceive that these improvements have a lasting effect on the level/quality of my fellows' communication skills. So, for me, it was disheartening to see such a well-designed study of these techniques be so 'negative.' Admittedly, my first-hand experience with this is has been so positive that I find it nearly impossible to believe that the techniques aren't effective.

That said, as I have thought about this investigation, one of my conclusions is that perhaps the reason I perceive the techniques to be so effective is that I have been using them, myself, to train palliative care fellows (not medical interns). My fellows 1) are physicians who are very, very motivated towards excellence in physician-patient/family communication, and 2) after the Vitaltalk-style workshop they continue to have close supervision and feedback from me and my faculty on their communication. Effective, empathetic, patient-centered communication is a huge, explicit part of their curriculum, as opposed to ineffective, aloof, and pathology-centered communication being a huge part of the "hidden curriculum" as it is for too many other medical trainees. I think it's possible that those phenomena may, in part, explain the disconnect between the apparent ineffectiveness of the Curtis trial vs my own experience with these training methods.

I'll also note that I don't necessarily believe patients are the best judge of physician communication quality. Certainly, patient satisfaction with physician communication cannot be the sole measure of quality (note: I'm not suggesting that the Curtis trial judged the quality of communication uni-dimensionally). I am reminded of the CanCORS study, which showed patients with metastatic lung or colon cancer who did not understand that their chemotherapy was not going to cure them, were more satisfied with their oncologists' communication than patients who were better informed. Sobering stuff.

Conclusion
While the results of this trial are disappointing, the negative results may reflect how challenging it is to study patient centered outcomes of educational interventions.  This study also gives us an opportunity to reflect on how to define the patients who benefit most from communication training interventions, when the benefit is most likely to occur, and which trainees/practitioners might be in the best position to receive the intervention.  No doubt, there are other interventions which may improve clinician communication in pivotal conversations, and we should also reflect on ways to improve the studied intervention.  As a palliative care community, we should be interested in a multi-faceted approach that involves changing both practitioner behaviors and early patient/family preparation for pivotal moments near the end of life.  Evidence supports the notion that we can help trainees grow their communication skills.  Fortunately, we don't need FDA approval to disseminate medical education interventions which help trainees develop skills that most would agree are valuable.  This intervention remains an integral part of the equation.

For other perspectives on this study, see the JAMA editorial by Chi and Verghese, Vital Talk's commentary, and Geripal's commentary. 


*Disclosure: Lyle currently receives funding from an IU Health Values Grant to use these teaching methods with various fellowships at IU School of Medicine.  All opinions expressed in this post are solely those of the authors. 

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Patients attending an ambulatory consulting service in Adelaide, Australia were queried regarding their feelings about stopping medications, and the results were reported in JAGS recently.  The subjects, age 71 on average, were taking an average of ten medications.  Most subjects thought they were taking a "large number" of medications and 92% said they'd be willing to stop one or more medication "if possible."

Big shocker for Pallimed readers, I'm sure. Who wants to take ten medications?

This survey included a geriatrics population and was published in a geriatrics journal.  But if you practice palliative care or see patients with limited prognoses, you should take heart in the notion of slashing medication lists, especially when you can see no clear indication for the medications.  I'm looking at you, primary and secondary preventative medications. 

A few hypotheses for why it's so difficult for some physicians to discontinue medications:

1. Inertia:  It's easier to continue with the status quo.
2. It may require a discussion about overall prognosis:  "Wait a second, doc.  My doctors have been telling me for years to take that orange pill.  Are you sure it's OK to stop now?"  In other words, patients want to do the right thing, even if that means being burdened with taking a boatload of meds.  This is evidenced in the JAGS study by the fact that 71% of patients said they'd accept taking more medications, if necessary.  However, if a prognostic discussion has occurred (e.g. related to advanced cancer, etc), it's then easier to say "I think that medication has done it's job, I admire your commitment to taking it, and now it's OK to give it a rest."
3. Overestimation of actual benefit of medications: "He had an NSTEMI five years ago.  What if we stop the simvastatin and he has another MI? Sure, he's probably going to die from lung cancer in the next several months, but I don't want him to die from an MI. No, he's not having any coronary artery disease symptoms now, but I think it's best just to continue it."   Look at a meta-analysis of several studies evaluating the benefit of statins for primary and secondary prevention of cardiovascular events.  The number needed to treat to prevent one major coronary event was 28, which isn't horrible.  Yet it's not exactly dooming your patient to angina/MI before he dies, especially if you consider that the five studies evaluated in the meta-analysis followed patients for 5-6 years to look for the outcomes. 

I'm always careful to decide whether discontinuation of medications is within my purview as the palliative care consultant.  Is the patient burdened by the polypharmacy?  Do they have dysphagia?  Are they having side effects?  Are you concerned about interactions with other, more important medications?  Is the patient or family having trouble obtaining medications? Does it just plain not make sense for the medication to be continued because of the patient's prognosis?   If the answer is yes to any of these questions, I think it's well within your purview to recommend discontinuation, even if it's an unexpected recommendation from your referring physician.  In making the recommendation, I'd highlight the rationale from a palliative care standpoint.  Focus on the quality of life aspect. 

Use a shared decision-making approach with patients.  Even though it's OK to discontinue meds, it's also OK to not be dogmatic about it if the patient prefers to continue the med (as long as it's not harming them).

As hard as it is to stay on top of the deluge of new research (just even in your own specialty), it also never hurts to remain aware of research regarding the indications for primary/secondary prevention.  A good example would be a recent cohort study from the Annals of Internal Medicine which suggests the optimal BP in patients with chronic kidney disease may be 130 to 159/70 to 89 mm Hg, with patients in that group having lower mortality rates. 

If you're reading this, you're probably part of the choir already.  If so, here's a pat on the back to you for being vigalant about polypharmacy!

For more related to this topic, see my post from a few years ago about "Minimally Disruptive Medicine" (and some other related links in that post).   

Edit 9/22/2013:  Also, I just found some recent American data published in Journal of Palliative Medicine on statin use near the end of life in patients with cancer (along with a letter to the editor on the JPM study). Bottom line: Statin use common in this population right up until time of death, unclear how appropriate the use is in each individual patient, but opportunities to deprescribe were likely missed.