Mastodon 2013 ~ Pallimed

Tuesday, December 31, 2013

A Chance to Make a Difference in Hospice and Palliative Care

As you finish out the year this evening, you may be reminded that you still need to get a few more tax deductible charitable contributions in before the clock strikes midnight.  How do I know what you are thinking?  Because the data shows that New year's Eve is one of the most beneficial days for charitable giving.

So as you are planning your last few donations, I want to urge you to consider donating to the American Academy of Hospice and Palliative Medicine's Shaping the Future Campaign.  To honor the 25th anniversary of the Academy and help impact the next 25 years, the Academy has embarked on it's first every charitable campaign. The goal is $1.5 million dollars to help with advocacy, education and workforce issues.

I have been lucky enough to co-chair this campaign along with Dr. Ira Byock and Dr. Christine Ritchie. When I heard about this campaign starting, I knew I wanted to be on it.  Over the past decade I have seen all the good work the members of AAHPM have done collectively.  But the majority of this has been done on a volunteer basis with very tight budgets, and with participants always wishing they could do more.  As all of us clearly understand, to maintain inertia and dream big you need resources.  We have great members, who are smart, articulate and passionate about what they do.  We have some resources, but the 'dream big' ideas can get pushed aside for the more tactical day to day issues.

So if you have big dreams for what the future can bring to patients and the professionals of hospice and palliative care, I urge you to donate tonight to the Shaping The Future Campaign.  I have not made a direct ask to you, the Pallimed readership, until right now. No matter how big or how small, please take this opportunity to invest in yourself and your profession.

Tuesday, December 31, 2013 by Christian Sinclair ·

Monday, December 23, 2013

Dismiss Simulation for Palliative Medicine Communication Training? Not So Fast

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.

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. 

Monday, December 23, 2013 by Lyle Fettig ·

Wednesday, November 27, 2013

20 Ways to Discuss Advance Care Planning With Your Family Over The Holiday

Every one always talks about how we should bring up important topics like advance care planning, end-of-life wishes and health care values with our family. But no one really tells you how.  So in preparation for the holidays we bring you many different ways to bring up the conversation since you will be seeing family and friends who may have a say in what happens to you if you are never able to make your own health care decisions.  Some of these were collected from the Pallimed Facebook page, which we encourage you to come like, share and participate in. We present a variety of ways to get to the topic: some humorous and edgy, some will work for you, others clearly won't, but we wanted to provide a range of scenarios!

“Do you think this delicious turkey had a living will?”

“All I want for Christmas is for you to tell me your thoughts on artificial life support and your ideas regarding an acceptable quality of life. Fa-la-la-la-la---la-la-la-la.”

“Whoever assigned their Health Care Power of Attorney this year gets pumpkin AND apple pie for dessert!”

“The holidays can be so depressing sometimes.”
“You want to know what increases the risk of depression? Not knowing the wishes of your loved ones when they get sick. It’s a fact.”

“I always wondered if Katniss did any advance care planning when she volunteered for The Hunger Games.”

“I'm super excited to meet your parents for the first time.  Are you the health care power of attorney for either of them?”

"Wow, that tackle looked like he might have a concussion.  I hope he has talked to his family about his thoughts on medical care before this game. Dad, what would you want if you couldn't make your own decisions?"

“Do you think Kim Kardashian is the health care power of attorney for her mom?”

“Deck the halls with boughs of holly? Ha! How about we deck these halls with some advanced care planning documents, people!”

“Mom, where are the coupons for the Black Friday sales?”
“On the fridge next to my health care power of attorney.”

“Anyone else ever wonder how things may have turned out differently for Walter White if he’d had early referral to palliative care services?

“I know Uncle Bob is not here with us tonight (Bless His Soul), but I’m thankful he shared with all of us his wishes for when he got sick.”

“Do you know what you want for Christmas?”
“How about his and her living wills, wrapped in a health care power of attorney. Then we can talk about our values and thoughts on aggressive medical care over hot cocoa by the warm fire?”
“Well only if I get to tell your Mom that I’m your health care power of attorney!”

“Just so you know if I choke on this turkey I would like a sky burial where my body is fed to the birds. It seems only fair.”

“Hey everyone, time to cut out paper snowflakes with my previous advance directives! I just updated them last night.”

“Mom, I can't believe our cat died.”
“Well, kitty had an advance directive, and it said not to put him in a kitty nursing home or else he would haunt me forever. Now what would all of you at the table haunt me for if I didn't follow your wishes?”

“Did you hear about that reporter who tweeted from his mother hospital bed as she lay dying? Do you want me to tweet about that mom?”

“What’s on your bucket list? Mine starts with an advance directive.”

“I read this blog post where someone was trying to think of clever ways to bring up advance care planning and end of life issues at holiday dinners.  Let’s try to think of some.”

“Hey, do you have a second?  I wanted to talk to you about something really important because I love you.”

Please share with us your holiday story of advance care planning in the comments!

Happy Thanksgiving and Hanukkah from us at Pallimed!

Wednesday, November 27, 2013 by Christian Sinclair ·

Wednesday, October 30, 2013

NHPCO Releases 2013 Facts and Figures for Hospice Care in America

Every Fall the National Hospice and Palliative CareOrganization releases the Hospice Facts and Figures report, just in time for National Hospice and Palliative Care Month. The format overall is relatively the same with some minor differences.  Overall, the same trends we have seen over the past few years have kept going in the same direction with the same velocity:
  • Increased # of patients served* (1.5M)
  • Increasing average length of service (71.8d)
  • Decreased median length of service (18.7d)
  • Slightly higher percentage of elderly patients served
  • Higher diversity of patients served
  • Increasing percentage of non-cancer diagnosis led by debility and dementia
  • Increasing number of hospice programs (5,500)
  • Increasing percentage of for-profit hospice programs
  • Increase in Inpatient Hospice (GIP) days
  • Declining satisfaction rates (although still high) 
*NHPCO revised some of their past estimates of total patients served and is currently using a line graph with confidence intervals instead of a bar graph with a single number.  At the end they have an Appendix which explains the data sources and the estimates.

I find this to be a very helpful guide to understanding end of life care in the United States and have shared and discussed it in IDG and with organizational leadership.  It serves as a helpful benchmark for a hospice program (in addition to the annual PEPPER reports) compared to national standards. It is also extremely helpful for presentations as you always want to make sure you are using the most up to date statistics on hospice care.  How do you use the NHPCO Facts and Figures?

I always thought it would be good to have a nice public spreadsheet with all the data from the past NHPCO Facts and Figures. (Although the report is copyrighted which we respect, it seems like a good crowdsourcing or Open Data project.) To save you from having to search for past PDFs I have listed all the ones I am familiar with here. Download them before the links are broken!  (If anyone has them from earlier please send them to me or add the link in the comments)

Wednesday, October 30, 2013 by Christian Sinclair ·

Thursday, October 24, 2013

"What would you do if it were your kid?" - An Invitation for Empathy

(Ed. - Please welcome Jennifer Linebarger, MD, MPH, FAAP to Pallimed.  Jennifer joins us and will be helping beef up our pediatrics focus here at Pallimed. We are thrilled to have her! - Sinclair)

I had just begun reading Dr. Danielle Ofri's latest book, "What Doctors Feel: How Emotions Affect the Practice of Medicine", when I opened The New England Journal of Medicine to find David Korones' essay "What would you do if it were your kid?" As he points out, nearly all of us have been asked, have heard this "plea to share with them, as a partner, the heavy burden of decision making." And nearly all of us have squirmed in our seats a little each time.

I still remember the child in the ICU, sedated and on a ventilator as her parents waited for the fungus in her lungs to clear. The note on her door said, “Docs, if ‘Plan A’ didn’t work, the alphabet has 25 more letters! So stay cool.” Yet, the infection was persistent, and her parents were asked to decide – continue as is, perform surgery to remove the fungal ball, or to withdraw the ventilator support and keep her comfortable as she died. The whole team gathered with the parents – the ICU doc, the BMT primary, the infectious disease specialist, the cardiothoracic surgeon, and me, the palliative care doc. The options were presented. The table fell silent as the parents processed the decision before them. Then the father asked, “What would you do?” And after a few furtive glances, one-by-one every provider around that table shared their opinion.

There was not a unanimous response from the providers at the table. But everyone sat with the parents as they faced a heart-wrenching decision. Two years after her death, her parents sat before a group of second year residents and reflected on that family meeting, and on the empathy they felt. It buoys them on their waves of grief to this day.

While the word "empathy" does not appear in Korones’ essay, I think it is at the heart of everything he says. Perhaps it is because I was reading Ofri’s book, and on page 48 she explains,
“Empathy is a cognition, a thought process that allows you to understand the patient’s feelings while not necessarily feeling them yourself… and the empathic doctor needs to be able to clearly communicate that understanding” (p48).
When a patient or a family member asks, “What would you do?”, they are inviting empathy.

ResearchBlogging.org1. Korones DN (2013). What would you do if it were your kid? The New England Journal of Medicine, 369 (14), 1291-3 PMID: 24088090

2. Meyer EC, Lamiani G, Foer MR, Truog RD (2012). "What would you do if this were your child?": practitioners' responses during enacted conversations in the United States. Pediatric Critical Care Medicine 13 (6) PMID: 23034458

Thursday, October 24, 2013 by Jenni Linebarger ·

Friday, October 11, 2013

World Hospice and Palliative Care Day 2013: Palliative care as a human right

This Saturday October 12th, 2013 is World Hospice and Palliative Care Day ( and if you are in the United States like me (and most Pallimed readers), the majority (if not all) of your palliative care advocacy efforts are local, regional or national.  Outside of the UK, Australia or Canada, I'll admit to being fairly naive for most of my career when it comes to the palliative care access issues in the rest of the world.  I've explored and participated somewhat in the global health issues of symptom control and pain access, but the local and national needs always seemed to take precedence.  

In the last few months, a few people have done a lot to help open my eyes to the importance of understanding palliative care through the eyes of the world. The efforts of Dr. Jim Cleary (@jfclearywisc) on Twitter (#hpmglobal) and leading the Pain and Policy Studies Group, in addition to Dr. Holly Yang (@hollyby) and Dr. Frank Ferris and their international work, have helped illuminate the challenges faced in other countries who are not as open when it comes to opioid access, or palliative care training.  

So for World Hospice and Palliative Care Day tomorrow I encourage you to increase your awareness about global palliative care issues the whole year through.  But since awareness is real only the first step, I would also ask that you sign The Prague Charter in an effort to make governments recognize palliative care as a human right.  It is already sponsored by:
  • European Association for Palliative Care (EAPC)
  • International Association for Palliative Care (IAHPC)
  • Worldwide Palliative Care Alliance (WPCA) and
  • Human Rights Watch (HRW)

Background information on the charter can be found on the European Association for Palliative Care website.  Basically it asks government to support access to medications, palliative care training, public health policies that support patient and families in times of serious illness and around death, and finally integration of palliative care into the healthcare system continuum.

Once you sign it, share it and when you share it, write why it is important to you.  Here is what I added to my signature on The Prague Charter:
As a palliative care doctor, I have seen suffering damage people and families, but I have also seen the ability for skilled clinicians taught the basics of palliative care, who are able to relieve that suffering.  In that act of relief, those clinicians also create a healing process for patients and families even in the face of serious illness.  With access to critical pain and symptom medications and the proper education more clinicians can make a true difference in people's lives around the world.

Friday, October 11, 2013 by Christian Sinclair ·

Friday, October 4, 2013

God doesn't give you more than you can handle: helpful or unhelpful?

In the face of a crisis, many people are challenged to find constructive and meaningful ways to engage in conversation and so often they fall back on platitudes. Simple, hopeful, semi-philosophical phrases we have heard in many other situations may sound important to the speaker, but the receiver finds them meaningless and tone deaf. I'm sure you have heard many of these uttered to patients by well-meaning family friends, and even health care professionals:

"This too shall pass."
"Stay strong."
"Think positively."
"I'm sure it will be OK."
"It is what it is."
"God won't give you more than you can handle." 
Many in that list are generic, perhaps based off of some quasi-scientific research that a good attitude means you can beat your colon cancer.  But the last one is particularly interesting because it calls upon spiritual beliefs, which can be a strong source of support for the critically ill. I have heard a few chaplains who understand the origin and context of this phrase, criticize the crude application in times of sickness.  I also have worked with chaplains who utilize this phrase to explore and discuss a patient's own religious values. When I hear it in a clinical context, I'm not sure I have explored the deeper meaning, so I was very interested to read this frank rebuttal of "God won't give you more than you can handle" by Pastor Nate Pyle.
"Limp, anemic sentiments will not stand in the face of a world that is not as it should be."
Pyle explains that this phrase is often sourced to the Bible but the original statement is about temptation not suffering.  I think this is a great post to bring to team and discuss how we as professionals who see the intersection of suffering and spirituality everyday deal with statements like this. I posted the article earlier this week to the Pallimed Facebook page, and it garnered a lot of responses.  Here is one that I think many in palliative care will agree with:
Call it what you will, but someone people hang on to this for their hope and sanity. Even though I agree with this blog, even his blatant use of calling it what it is, sometimes to "correct" those (in the moment) who are holding on to this falsity as their hope and sanity, it is equivalent to pulling the chair out from under them.
When you hear, "God doesn't give you more than you can handle," how do you respond?

H/T to Rick Bauer (@nvrflycoach) for posting the original blog to Twitter
Photo Credit: Not attributable after using Tin Eye Reverse Image Search

Friday, October 4, 2013 by Christian Sinclair ·

Tuesday, September 24, 2013

No More Excuses: Having tough talks in pediatrics

“What words can be uttered? Your turn just slightly and there it is: the death of your child. It is part symbol, part devil, and in your blind spot all along, until, if you are unlucky, it is completely upon you. Then it is a fierce little country abducting you; it holds you squarely inside itself like a cellar room – the best boundaries of you are the boundaries of it.” – Shirley Jackson, from “People Like That Are the Only People Here,” in Birds of America*
*             *             *
“Doctor, you might have children just like anybody else. Would you want somebody to give you false hope or tell you, ‘OK, your child is gonna be fine,’ and you know she’s not?”  - Parent feedback (Meert et al)

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

I’m sure that the 18 year old version of me who read the story took something from it far different that any of the other versions of me who have read it. As it is now, being a mom as well as a physician, I find it almost impossible to get through because it is too real and too scary. Although “fiction,” it is a scene that happens every day, in which moms like me, with kids like mine, and doctors like me, with patients like mine, find themselves abducted by that “little country.”
So when I sat down to write about Amy Sanderson and colleagues’ report on their findings of “Clinician perspectives regarding theDo-Not-Resuscitate order,” I knew I had read something before that would tie in with this study. It was another case of “Huh, this sounds familiar…” I knew there was another angle to this, so I dug through my file folders until I can to the one that said “Parental Perspectives” and another one labeled “Provider Perspectives.”

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

In the other folder, articles filled with identifying how pediatric care providers handle communication during times of critical and/or terminal illness. These pieces consistently find similar issues with communication between provider and parent/decision-maker. In this particularly lovely Pallimed piece from not so long ago, the author (okay it was me), discusses some of the barriers that seem to keep pediatricians from having the tough conversations. That post particularly pointed out studies citing lack of confidence in these communication skills, a lack of training in these skills, and a concern about prognostic uncertainty in pediatric patients’ disease processes as key barriers.
There is another common barrier theme that arises from the studies of the providers, though. It is one that, in light of what we see from parent surveys and studies in which parents are almost begging for more information, may surprise you.

Pediatricians give, as one of the most common reasons for NOT engaging in goals of care, end of life, or code status conversations a “lack of parental readiness” or “lack of parental acceptance.” There are worries about “unrealistic parent expectations,” as well as “clinician concern about taking away hope.” When I read these reasons, and also think about the combined lack of education and training, as well as lack of confidence, it makes sense how these crucial conversations become avoided. If you don’t feel like you know what you are doing, you are afraid of messing it up, and also afraid of upsetting or having conflict with parents, then pausing to ask “what are we doing and why? And is this the right approach or your child?” takes a backseat to the pressing issues of the vent and the drips and the day to day medical management. Just because it is an understandable position doesn’t make it right.
At the same time clinicians are grappling with feeling unprepared and uncertain of how to communicate, we have parents saying, “we need information from our child’s care team so that we can know what is going on, have time to process it and understand it, and be able to feel that we are helping make to most appropriate decisions for our child.” They want information given in smaller portions, in lay terms, on a regular basis.

As a parent is quoted in a study by Elaine C. Meyer and colleagues, “Listen. Answer all questions. Give all information—parents can handle it. What we cannot handle is not knowing what is going on. If something is going wrong, tell us.”
Is anyone else getting that sinking gut feeling?

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

What they found is disconcerting. Although about 2/3 of those surveyed -- physicians as well as nurses-- stated that “a DNR order indicates limitation of resuscitative measures only in cardiopulmonary arrest,” the other 1/3 “considered the DNR order to be the threshold for the limitation of treatments not specifically related to resuscitation.” Finally, about 6% of those surveyed “believed that a DNR order implies that only comfort measures are to be provided.”
Let that sit for a moment.

I’m sure most of us have had the experience of being called on a patient and hearing something that begins, “Well, she’s a DNR, but I went ahead and checked her vitals anyway and she has a fever of 102.” The implication of that phrasing, or variants of such phrasing, are that since the patient “is” a DNR (it’s a new species, look it up) that routine evaluation and management of non-cardiac arrest scenarios is to be discontinued. I cringe when I hear this call, and cringe more reading the misguided implications of the DNR order in adult, and now, in pediatric literature.
Perhaps the failure to have adequate communication upstream leads to consequences in care downstream when DNR orders are, as was found in Sanderson’s study, perceived to affect care beyond response to cardiopulmonary arrest.

How does this happen? How does a DNR order become a signal of “comfort care only?” Or lead to an assumption that it might include “limitation or withdrawal of diagnostic and therapeutic interventions?” Theory: Given the discomfort that pediatric providers have with communication near the end of life, but also their desire to protect their patients from what might be seen as a futile intervention, a conversation about a DNR order might be a proxy for a “bigger” conversation. It becomes a sort of substituted goals of care conversation, in which decisions are made and judgments potentially assumed, but in which that critical element of mutual understanding between all parties involved remains lacking.

There has been a growing demand for increasing education aboutcommunication at the end of life and palliative care to pediatric residents, but it is slow to gain steam in training curriculum already tightly packed to fit into three years. And this does little to address the needs of practicing pediatric providers, doubly frightening since they are the ones training the future providers. It is a need that, no matter how far we advance in the world of medicine, is going to remain. Sad as it is, difficult as it is, unfair and tragic as it is: children are going to die. These children and their families deserve care providers who can as deftly handle end of life care as they do handling vaccination schedules or chemotherapy regimens or DKA.
As a parent, the idea of something medically horrible befalling one of my children is almost too much to bear. The idea that I might be left in the dark about his condition or prognosis and not have the information I need to make the best decisions for my child and our family is another layer of suffering I don’t think I could tolerate. When the unthinkable happens and a parent is kidnapped into that “cellar room” that Lorrie Moore described,  she needs to hear voices from the outside telling her what is going on throughout her time in the cellar, not just when it is about to be flooded or set ablaze. And though no one can truly get into that cellar room with her, they can open windows into it, hold a hand through it and promise not to let go.  

For those providers who don’t feel they can do it, there are providers out there who can and will. There are those of us passionate about pediatric palliative care here to guide and support our professional colleagues just as much as we are here for the patients and the families.  We know that sometimes the providers feel like they are in their own cellar room, and we care about our professional colleagues as well as patients and families. We can’t help you if you don’t let us, though, and even though it can be hard to ask for help, consider the alternative. Consider the patient and her family. Consider that perhaps after having a palliative care provider there with you a couple of times, you will be able to feel confident and comfortable enough to handle the next one on your own. And then maybe teach others how to do the same…just like an invasive procedure in which you “see one, do one, teach one,” the end of life or advanced care planning or code status conversation(s) are skills that need to be honed and practiced…and then TAUGHT.
The burden isn’t just on pediatricians to ask for help from their palliative care colleagues, though. For those of you adult palliative care providers out there, don’t think you can weasel your way out of this: you are needed as well, and yes, you CAN handle working with young patients.  Just as pediatricians shouldn’t opt out and say “but I’m a pediatrician, I don’t do death,” you adult HPM docs don’t get to say, “But I’m an adult palliative care provider, I don’t do kids.”  We’ve all got to pitch in here.
Really and truly, you can do it. And if you run into a question or a problem along the way, guess what, the pediatric palliative care community is pretty small, and we are generally very nice,  and we LOVE to help our colleagues. You can email us (I’m or or call us or hop onto our listservs. AAHPM has a Pediatrics SIG. CAPC has an entireforum board for pediatric palliative care issues. The American Academy ofPediatrics has a SIG for pediatric palliative care. The NHPCO has a section onpediatric palliative care. We live on Twitter as #PedPC.  I’m missing other routes and organizations here, so if any one reading this wants to add to the comments, please do. Basically, we want to shout “Help us help you!”
If we can work together, everyone will stand to benefit.

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

Other cited works:

Beach, M. C., and Morrison, R. S. (2002). The effect of do-not-resuscitate orders on physician decision-making. Journal of the American Geriatrics Society, 50, 2057-2061. (Open Access PDF)

Longden, J. V. (2011). Parental perspective of end-of-life care on paediatric intensive care units: a literature review. Nursing in Critical Care, 16(3), 131-139.

Meert, K. L., Eggly, S., Pollack, M., and Anand, K. (2008). Parents’ perspectives on physician-parent communication near the time of a children’s death in the pediatric intensive care unit. Pediatric Critical Care Medicine, 9(1), 2-7. (Open Access PDF)

Durall, A,, Zurakowski, D., and Wolfe, J. (2012) Barriers to conducting advanced care discussions for children with life-threatening conditionsPediatrics, 129(4), e975-e982 (Open Access PDF)

Photo credits: 
Birds: Audubon "Illustrated Birds of America"
Bridge: Emily Riegel Personal 
Child: Emily Riegel

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Tuesday, September 24, 2013 by Emily Riegel ·

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