Friday, May 31, 2013
The wait was too long. We had to change plans.
I arrived home late after a long day at work and my wife asked if I wanted to go to that new restaurant everyone had been talking about. We hopped into the car and drove off, not really thinking about a reservation. We both groaned when the restaurant came into sight and we saw throngs of people waiting outside. "Maybe it's not as bad as it looks," I said as I jumped out of the car to check, only to find out there was a 90 minute wait. As I walked back to the car, I had already made up my mind to go down the road to an old standby. My wife readily agreed without any deliberation. Relief of hunger superseded novelty as we made a restaurant selection.
Of course, choosing a restaurant on a Friday night is nowhere near as complex as medical decision-making. We had the opportunity to choose between two appealing restaurant options with guaranteed good conversation at either place. Patients sometimes choose between seemingly "bad" and "worse" options. How might the decisions be similar, though? When the rubber meets the road and we actually have to make a decision, the facts and assumptions surrounding the decision might have changed, which may affect the decision.
The woman arrived with a set of assumptions which weren't 100% accurate, partially driven by fears derived from past experience.
What about when the patient doesn't have decision-making capacity? If you're fortunate, the patient will have spoken in depth with their surrogate and will have completed an advance directive which can serve as a guide as you make decisions. While helpful, living wills are often times written in vague language which may be difficult to interpret. POLST can help with specificity of preferences, but even then, it may have been completed based on a set of assumptions which might have changed.
What do you do when one decision seems to be in a patient's best interest, yet the patient's advance directive points towards another decision? In an article published in JAMA Internal Medicine, Alex Smith, Bernie Lo, and Rebecca Sudore describe a framework to tackle this challenging dilemma and demonstrate in two cases how to use the framework.
Here are the questions they recommend asking yourself:
- Is the clinical situation an emergency that allows no time for deliberation?
- In the view of the patient's values and goals, how likely is it that the benefits of the intervention will outweigh the burdens?
- How well does the advance directive fit the situation at hand?
- How much leeway did the surrogate provide for overriding the advance directive?
- How well does the surrogate represent the patient's best interest?
I'm glad the authors have drawn attention to this dilemma. The advance directive can inadvertantly be a conversation stopper, i.e. "Well, the living will says such and such, so I can only assume that they would/wouldn't want such and such." What's the number 1 pearl for successful palliative care consultation, though? Assume nothing, ever. Don't anchor to the wrong goals of care, or assume the patient doesn't have mixed goals of care. The proposed framework invites providers to use the advance directive as a conversation starter, especially when it doesn't seem to make sense. Explore your intuition with curiosity, or else you might end up in Abilene with your patient and their family along with you. (Apologies to those readers from Abilene- I'm sure it's a lovely place.) Remain open to the possibility that the advance directive made sense all along and you were the one with the misassumptions.
Just like any medical decision, patient centered goals of care should be at the center of any framework. At the heart of the dilemma is the question, "what do you do when a treatment does/doesn't contribute to the patient's goals of care yet the patient's advance directive seems to indicate you should do the opposite?" Question two of the framework carries significant weight, and in fact, should serve as the basis for deciding what is in the patient's best interest. A circumstance might still arise where you go along with an advance directive which seemingly contradicts one of the patient's goals of care (e.g. emergently intubating a patient with a very poor prognosis when the patient has selected intubation and related interventions on a POLST form). In that event, it makes sense to quickly delineate a time-limited trial of therapy and reevaluate progress overtime as benchmarked against the patient's goals of care.
A few words of caution. Jurisdictions vary with respect to how much leeway surrogates may have. Be aware of applicable statutes and the fine print of the directive. If the directive prohibits leeway, yet you and the surrogate both feel strongly that a contradictory decision is in the patient's best interest, then carefully consider the options. Consider meeting with other family (along with the surrogate) to review the decision. Consider an ethics consultation and/or discussion with your legal department. (For the reasons above, I'd much prefer if standard forms "nudged" people towards permission of leeway, making it the default option yet giving people the option to write out specific decisions which are inviolable.)
Lastly, the "scale" in the article's figure best fits a scenario where an advance directive indicates a preference against medical intervention yet the provider thinks intervention might be in the best interest of the patient. This slightly limits the generalizability of the figure, making it a little harder to apply to a circumstance where a directive indicates a wish for intervention yet the provider thinks the intervention would not be in the patient's best interest. With this small weakness aside, I think the authors ask the right questions and one can easily extrapolate the model scale when needed.
What do you think about the framework? Join the conversation below or at Geripal.
Friday, May 31, 2013
Wednesday, May 29, 2013
When I saw this billboard, my initial response was to recall a recent article about CTCA which challenged their dubious centerpiece claim: Patients with cancer who receive treatment there survive longer than those who don't. The article pointed out significant selection bias in CTCA's data. Could individual patients have outcomes comparable to any other cancer center? If the center uses best practices in oncology (including appropriate provision of palliative care), then I have no doubt that some patients have a good experience at the center. Even though, several patients or their relatives have asked me about the center, none of them have been evaluated or received treatment at CTCA. At least a few of these patients (or a family member) have gone as far as calling CTCA but haven't gone any further.
Enter a salient point about my practice: I work at a safety net hospital where many patients either have Medicaid or no insurance. They will never receive care at CTCA for this reason. But they'll still see the billboards and hear the ads on TV or radio. Patients in a safety net setting are more likely to present with advanced disease and a poor performance status. The risks of cancer directed therapy sometimes outweigh the benefits at the time of diagnosis. The likelihood of "early" palliative care referral may increase. Patients and their families face a double whammy. You have a terminal cancer and cannot receive any cancer directed therapy. Without any good way of independently verifying the latter news, how could you not wonder if perhaps CTCA would be a better option? Even though my patients have access to experts from an academic National Cancer Institute center and a full interdisciplinary palliative care team, I cannot fault them for wondering.
I won't debate CTCA's right to not-so-subtly suggest that all cancer care in my city is substandard and once you receive the diagnosis, the only acceptable approach is to make a nauseating three-plus hour car trip to another city, far away from the family, community, and spiritual support which the patient may already have locally. At the same time, I reserve the right to be irritated. If a patient asks me about a second opinion, I have several excellent options locally, thank you. Ranting done, though. Onto the kernel of opportunity.
An anxious daughter tells you she saw this billboard. She asks if it might be an option for her father who has advanced lung cancer and is hospitalized for hypercalcemia and delirium. It's time to find a chair for her and yourself if you haven't already. She trusted you enough to ask you about it. You can win further trust and more. How? Turn it into an opportunity to educate, discuss and explore goals of care.
- "No stone should be unturned": Acknowledge the desire to look into all possible therapies which may benefit the patient.
- Ask her what she's found out about the center. What specifically appeals to her? Listen for information which provides further clues to how she views the goals of care. Resist the temptation to explain immediately why the approach wouldn't work. Reflect outloud those outcomes which seem most important to her.
- Ask her to review what she knows about her father's condition and treatment approaches discussed previously by you or your colleagues. There will likely be questions about why certain cancer directed therapies aren't appropriate for her father. Make sure to address these questions. Incorporate your recommendations for how to address the concerns raised in step 2.
- Invite her to give your opinion on the center. By now, some patients or family might not even need your opinion, but many still will want it. Give your opinion- it's OK. If you're not sure what to make of some of the claims the daughter heard, acknowledge that. If you are confident that you or your colleagues adhere to best practices in oncology care, it's also OK to say that. While treatment may vary some from center to center, people sometimes assume that there's greater variation than actually exists. You don't need to belabor the point, though. You're not here to defend yourself, your colleagues, or your institution. You're here to help a woman who is in normative anticipatory grief. She's yearning, which CTCA capitalizes on in their advertisements. Of course, it's normal for her to want her father to receive the best care possible.
- If the desire for a second opinion remains, offer to help arrange one locally, if appropriate. If the patient can travel further, you may also mention other options if more appropriate. I am obviously not suggesting there is no value in second opinions. Sometimes, the value comes from reassurance that the first provider is "on target" and occasionally, the patient will benefit from a different treatment approach.
- If the patient or family is on the verge of making a trip for a second opinion, help them think through the logistics of travel.
- Above all, ensure non-abandonment and address emotion. Even if the patient goes far, far away, you are still likely part of the patient's care team. How might it be destructive for a patient or family to go to a second opinion and not be sure if the original providers will care for them when they come back?
Photo Credit: "Drought vs Irrigation" by Poizon Myst, licensed under Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
Wednesday, May 29, 2013
Tuesday, May 28, 2013
The ASCO Post is the People magazine of oncology. The articles are short… typically one page, with lots of pictures consisting mostly of the authors. It is medical journal lite, with terms and prose simple enough for a layman to both understand and to not fall asleep by the end of the article. It probably can be best described as Oncology for Dummies.
(Also, to give the full extent of its look and feel… there is usually one or two ads attached with that gooey stuff you try to pull off the paper, but the kind that usually snaps back and hits you in the eye.)
In any event, the May 1st issue featured an article on access to care. The title suggested it was about patient access to oncologic care, depending on geographic and economic factors. That was a focus, but I’m glad I kept reading to see that it wasn’t the only focus. The last section of the article was titled, “Missed Opportunities for End-of-life Care?” If I hadn’t kept reading, it definitely would have been a missed opportunity for me.
The article summarized a manuscript in the Journal of Oncology Practice authored by Gabrielle B. Rocque, MD and her colleagues. This group analyzed data from their institutions and determined that an unscheduled hospitalization for a patient with advanced cancer, “strongly predicts survival of fewer than 6 months.” Wow. Not surprisingly, the authors recommended a palliative care consultation as a potential intervention for this group of patients.
When I worked at CIGNA many years ago, there was a training program known fondly as “bing-bong school.” It was an internal training course for licensure exams. The idea was to train students that a key word in a test question should lead to a mental “bing-bong,” that would trigger the correct answer. Kind of like the answer to any question about American history is, “manifest destiny.”
So, I wondered if this manuscript wouldn’t suggest a “bing-bong” opportunity in community oncology practice. Should a palliative care intervention be part of the automatic response? A hypothesis could be that most medical oncology admissions are unscheduled or unexpected, but not all. Would there be some obvious patients to exclude? An oncologist colleague and I pondered this and thought that most admissions would have a substantial symptom-related component, so that if we could keep the focus more on the palliative side than the hospice side, we may ease some apprehensions, and lower barriers.
We thought we might exclude two populations from “bing-bong” interventions… Patients receiving adjuvant therapy who were being admitted for neutropenic fever, which might be asking an awful lot of oncologists, to even have a wisp of hospice near these patients, and is outside of the guidance from Rocque et al. And, patients on BMT regimens may arguably benefit from palliative care interventions, but one would hope and perhaps expect, that such interventions would be a part of the continuum of care for those patients well before the admission stage. The focus could probably be on lower hanging fruit.
We landed on a proposed idea that any admission of an oncology patient with metastatic disease ought to have a palliative care intervention. We felt that could be a fair straw man…a starting point.
But then I wondered if that really is a starting point, or a start of an endpoint. In an article we co-authored, my friend Karen Porter-Williamson wrote that too often the inpatient hospice team is the “stop team,” only called in when all else fails. If that is the case at a hospital, it seems that the palliative intervention probably wouldn’t yield great results. My sense is that Rocque and colleagues, as well Porter-Williamson and her team, would see this as an opportunity to start a conversation that extends beyond discharge, and allows the development of a concurrent care path in the outpatient setting, in parallel with continued care by the oncologist.
I think there are places where this could happen, but many places where it could not. Where an adequate or strong inpatient palliative care team may exist, perhaps the outpatient side does not. Or perhaps there is an outpatient partner, but the logo on the name tag says “hospice” on it. Or, perhaps there are no true partners, but an array of options on a referral list.
While I think there may be an ability to distill a “bing-bong” moment with the inpatient oncology patient, our opportunity to enhance care will only be realized if the inpatient intervention is the beginning of the journey in palliative care. A “one and done” approach might make us feel like we have achieved something, and maybe moved the board pieces a little closer to the end game of accreditation, but the patient and family truly win only if the intervention evolves into a long-term engagement.
John Hennessy is Vice President, Operations for Sarah Cannon, the global cancer enterprise of Hospital Corporation of America (HCA). His focus areas at Sarah Cannon are medical oncology, survivorship, and palliative care. He serves on the Board of Trustees of the Association of Community Cancer Centers (ACCC), and on several committees for the American Society for Clinical Oncology (ASCO), including the Clinical Practice Committee.
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Bath, C: Access to Care: Who Gets Referred to a Medical Oncologist and/or Another Cancer Specialist and Who Receives Treatment for Advanced Cancer? The ASCO Post, Volume 4, Issue 7 2013
Rocque GB, Barnett AE, Illig LC, et al: Inpatient hospitalization of oncology patients: Are we missing an opportunity for end-of-life care? J Oncol Pract 9:51-54, 2013.
Hennessy J, Lown B, Landzaat L, Porter-Williamson K: Practical Issues in Palliative and Quality-of-Life Care J Oncol Pract 9:2 78-80, 2013
Photo Credit: "baby's first homemade ornament" by Darwin Bell - Some Rights Reserved
Tuesday, May 28, 2013
Sunday, May 26, 2013
The exact origins of Memorial Day are not exactly agreed upon. Many cities claim to be the founders of this holiday. The tradition, however, dates back to Civil War times. At one time Memorial day was known as Decoration Day, as it was the day families and friends of fallen Civil War soldiers would choose place flowers and "decorate" the graves.
The first official Memorial Day was May 30th 1868, after the day was declared by General John Logan, commander of the Grand Army of the Republic (a veterans' organization). The holiday was adopted by Michigan and New York and then by all the Northern states through the late 1800's. The Southern states had there own days they observed and did not recognize this holiday until after WWI (several Southern states still have a separate Memorial Day type holiday to honor confederate soldiers). Apparently the date, May 30th was chosen as it was not the anniversary of any battle.
At first the holiday was just to honor the Civil War dead. After WWI, Memorial Day changed to honoring all of Americans who died fighting in any war. Now it is often seen as a day to remember all who have died. (I remember going to the cemetery to decorate the graves of family members on Memorial Day when I was young.) In 1967, the name of the holiday was officially changed to "Memorial Day" and in 1971 the National Holiday Act changed the date of the holiday to the last Monday in May, creating a very convenient 3-day weekend. There has been for several years a push to move Memorial Day back to May 30th in order to try to give some meaning back to the day (so it's not just the long weekend when the pools open).
The top photo is from Arlington National Cemetery. Every year around Memorial Day, the 3rd 
U.S. Infantry Regiment or The Old Guard, in a tradition called "Flags In", places small flags in front of all graves in the cemetery.
The Fredericksburg National Cemetery hosts an annual Luminaria each year for Memorial Day. Approximately 15,300 candles are placed by volunteers on each of the graves (80% of which are unknown soldiers).
I have often wondered about the 
significance of the red flowers being given out for donations around this time every year. Inspired by the poem, "In Flanders Fields" (poem below) by Canadian WWI veteran and poet John McCrae, the Veterans of Foreign Wars take donations for their "Buddy" Poppy every year around Memorial Day. Theses poppies are assembled by disabled and needy veterans. Since 1922 this program has been raising money for veterans and their families through the poppies.
-
- In Flanders Fields
- In Flanders fields, the poppies blow
- Between the crosses, row on row,
- That mark our place; and in the sky
- The larks, still bravely singing, fly
- Scarce heard amid the guns below...
- We are the Dead. Short days ago
- We lived, felt dawn, saw sunset glow,
- Loved, and were loved, and now we lie
- In Flanders fields...
- Take up our quarrel with the foe:
- To you from failing hands, we throw
- The torch; be yours to hold it high.
- If ye break faith with us who die
- We shall not sleep, though poppies grow
- In Flanders fields...
Sunday, May 26, 2013
Friday, May 24, 2013
Modal verb (n.): a verb such as can, must, may or will that is used with another verb (not a modal) to express possibility, obligation, permission, intention, etc.
Quick: You see a patient who has progressive hypoxia and the nurse hands you the results of the arterial blood gas while the patient is on a non-rebreather. The partial pressure of oxygen is 50 mmHg. What should you do? Pull out your Washington Manual of Medical Therapeutics if you must.
Now, you see a patient who has metastatic cancer. He has exhausted all chemotherapy options and has had extensive discussions about prognosis with his oncologist. He has expressed a goal to remain at home surrounded by family during his final weeks with a focus on comfort. He develops sudden dyspnea and instead of calling the home hospice, his wife calls 911 and he is transported to the emergency department. An ABG on a non-rebreather reveals a Pa02 of 50 mmHg. What treatment course might be most consistent with the patient's goals?
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| Mindmap of Modal Verbs via http://balanbalanbalan.blogspot.com/ |
Your answer to each question might have been different because of how the questions were framed. For the second question, you hopefully answered, "I need to talk with the patient and/or patient's surrogate about this, ASAP."
In a study presented at the American Thoracic Society meeting, researchers from the University of Pittsburgh recorded a simulated encounter between an emergency medicine physician, hospitalist, or critical care physician and a 78 year old man with metastatic gastric cancer in a similar situation. The researchers evaluated the frequency of five rhetorical strategies which the physicians used in the conversation, including: The next step ("we will"), a necessary action ("we must"), a convention ("we usually"), an option ("we can"), a treatment preference-eliciting question ("ask"). They evaluated how frequently each rhetorical strategy was used when discussing a) Intubation and mechanical ventilation and b) palliation (non-intubation and comfort measures). The results:
- Most physicians discussed life-sustaining treatments and only discussed palliation after the patient revealed his preference against intubation.
- 54% of physicians used a "must" statement when discussing life-sustaining treatments (e.g. "Medically, he needs to go on a mechanical ventilator") with another 6% using "will" statements and 4% using "usually" statements (e.g. "usually, we put patients like you on a ventilator").
- Only 86 out of 114 physicians reached a point in the conversation where palliation was discussed, in spite of the man's wish for comfort measures over intubation.
This study identifies two methods of framing. In 68% of encounters, life sustaining treatments featured as the first topic of conversation. The order in which options are presented represents an important frame and a nudge towards the first option listed.
The modal verb serves as the other vehicle by which the decision is framed. Have you ever heard a physician say something like, "If the mask you are on doesn't keep your oxygen level up, we might need to place a tube in your throat and hook you up to life support to keep you alive, but we want to know if you want that." Some patients will declare a longstanding preference against intubation and others might want it under any circumstance. I suspect there's a large group of patients in the middle who aren't sure, but say "well, if you think I need to do that, I guess that's what I have to do." You think you've identified the patient's preferences, but not really. Perhaps the patient has already inflated the chances of ICU survival with a good outcome, and now you've said that the patient needs to go on a vent. You've really just inadvertantly nudged the patient towards a decision, and a single word- the modal verb you have selected- might have sealed the deal.
Decision made. Frame, set, match.
How physicians use the modal verb in this circumstance likely plays a role in the determination of the patient's decision frame. More importantly, however, it may reflect the "inner frame" of the physician. Of the 54% of physicians who used a "must" statement when talking about LST, I don't believe that all of them would recommend intubation to the patient (if the patient asked). However, I hypothesize that a significant proportion of physicians have framed the decision in their head as "I have a hypoxic patient for whom I think mechanical ventilation is indicated, and I need to decide whether to intubate" rather than "I have a dying patient, and I need to decide what interventions are most consistent with his goals of care." In other words, in many cases the use of the modal verb "must" or "need to" may reflect the inability to consider how patient-centered goals of care might impact a decision.
A timeout can help. Think through the words you'll say during the conversation. Look at the modal verb for a second. If you think intubation is indicated medically and the vast majority of people would agree to it, then maybe it's ok to say "must" or "need to." Realize that you're nudging the person in that direction, but it may be OK in many circumstances (e.g. a 23 year old with status asthmaticus). If a reasonable person might not want the proposed interventions, at the very minimum, consider a change in your modal verb to the more permissive and frame-neutral "can" or "could" and closely follow it up with the alternative option of comfort measures. ("While we could place you on a mechanical ventilator, I'm afraid there's a high chance you would not come off the ventilator to be able to go home. Another option to consider would be to continue to focus on keeping you comfortable and making sure that your family can be at your bedside. Tell me what you think about these options?") Better yet would be to pause, make sure you understand a little about the patient's experience, values, and goals, and then frame the information about options, your preference question, or a recommendation based on that information. You may reorder the list of options, describing the palliative option first, using an "obligitory" modal verb to convey your strong support for the option ("We will focus on making you as comfortable as possible.") If you're absolutely clear that comfort is the overarching goal of care in a dying patient, I would even consider "negative" modals for ICU interventions. ("We should not" or even "we will not place you on a ventilator.")
I've focused a lot on the modal verb and have generated a plausible hypothesis about the effect of verb selection on the frame of the conversation (and thus the decision), but there's more to this study. In a separate analysis published recently in Critical Care Medicine, the researchers looked more broadly at variation in physician communication behaviors and decision-making roles. A minority of the physicians communicated short term prognosis (27% conveyed prognosis if patient were intubated and 38% conveyed prognosis without intubation). 39% sent the patient to the ICU and 9% decided to intubate (even though this wasn't the patient's preference--a medical error borne from inadequate communication). Only 36% explored the patient's broader values with 82% eliciting intubation preferences. So most talked about intubation preferences without the important contextual frame of prognosis and goals of care/values. One might say, "but only 9% decided to intubate, so most arrived at a plan honoring the patient's preferences against intubation without doing the values/goals of care or prognosis thing." What if the patient's preferences weren't so clear though? What other opportunities to honor the patient's goals of care might be missed? This patient probably shouldn't be going to the ICU 39% of the time.
For more on research about code status conversations in the hospital as well as how goals of care and prognosis frame code status discussions, see here.
This week, Geripal is having a "code discussion week." Alex Smith asked whether the default code status should be changed to DNR for patients with serious illness. (In fact, a comment on the post by Amber Barnato led me to the abstract for the abstract referred to in this post.) For many reasons, I doubt we'll get to the point of default DNR for anyone. We do, however, have control over the approach we take to the conversation, the language we use, and at the very minimum, the default modal verbs we use, or rather must use.
Friday, May 24, 2013
Wednesday, May 22, 2013
(A hearty welcome to Emily Riegel, MD (@emriegel) a Med/Peds physician who completed a hospice and palliative medicine fellowship a few years ago and is now at KU Medical Center helping lead pediatric palliative care in Kansas City. Emily is a keen observer who could easily be writing the great next medical drama on TV, but until then I'm happy she is contributing to Pallimed - Sinclair)
In the March issue of Pediatrics, Jonna D. Clark, MD, and Denise M. Dudzinski, PhD, take on
the audacious task of encouraging pediatricians to step into the role of
decision maker for terminally ill children and, in doing so, help alleviate the
burden of making decisions
regarding CPR from the shoulders of parents. In “The Culture of Dysthanasia: Attempting CPR in Terminally Ill Children,” Clark and Dudzinski
call into question the practice of requiring the “opt-out” approach to CPR, and
state that this “fails to appreciate the nuances of the special parent-child
relationship and the moral and emotional complexity of enlisting parents in
decisions to withhold CPR from their children.” The authors then provide two
tenets on which physicians ought to base this action of taking over decision
making for the parents of terminally ill children.
The first tenet is a brilliant description of the “therapeutic goal” of CPR, one that I would love to see come into more common use, to become as second nature in physicians minds’ as being able to state that “the therapeutic goal of antibiotics is to kill bacteria, or aid in the killing of bacteria.” The authors ask that physicians begin to look at the intervention of CPR in terms of its therapeutic goal being “not merely to resume spontaneous circulation but rather to provide circulation to vital organs to allow for the treatment of the underlying proximal and distal etiologies for the arrest.” This definition of the therapeutic goal of CPR was elucidated from the article by Bishop, et al, in their 2010 piece from the American Journal of Bioethics, which also asks physicians to rethink CPR’s utility based on its ability to address “the underlying disease process or…the distal causes of arrest.”
If we more readily viewed CPR in this
light, would it become just as easy to say, “CPR will not fix the advanced,
terminal cancer that has ultimately led, or will ultimately lead, to cardiac
arrest, so we [the healthcare team] are not going to give you CPR since it is
not a therapeutic option,” as it is to say to a patient (or his family),
“Antibiotics will not address the viral cause of your upper respiratory
infection, so I’m not going to give you antibiotics since it is not a
therapeutic option.”
Perhaps it would.
If one looks at physician’s prescribing practices in terms of using antibiotics1, often despite guidelines and recommendations and clinical evidence that they are not going to aid in reaching a “therapeutic goal,” it seems unlikely that when it comes to holding back on THE intervention, that physicians will actually be able to commit to making a much bigger decision for their patients.
The second tenet set
forth by Clark and Dudzinski is that there are limited cases in which
physicians ought to exert the decision making, and is only in cases where “all
treating providers agree that attempting CPR is highly unlikely to achieve this
therapeutic goal or will merely prolong dying.”
Let’s read that again, especially the part about “All treating providers agree…” Like adult patients facing a terminal illness, pediatric patients facing terminal illness often have a long list of treating providers. Just about any –ogist or –ivist may have some role on the treating team and could then be considered among the treating providers. The biggest challenge it seems is getting any group of physicians, who are highly educated and clearly very caring and committed providers, to agree on prognosis. Add in to that needing to agree on it publicly, perhaps in front of a patient or parent(s), and to remain consistent in it, along with the profound difficulties with prognostication itself in pediatric patients2, and I propose that the situations in which the criteria to move forward with physician derived DNR orders are going to be rare.
While my critique is in no way directed at the work of Clark and Dudzinski, who do a lovely job of outlining their objective, using case examples, and pulling in bioethical principles, especially as they apply to the unique nature of the parent-child relationship, I do find myself feeling critical of us practicing physicians and wondering if we are really up to this task. Is it in the nature of pediatricians to take this on? When I lecture on pediatric palliative care for our fellowship lecture series, I point out that as much as kids are not just “little adults,” and that they require a vastly different approach to providing them with palliative care, so is the same for pediatricians. Being med-peds trained, and working in both adult and pediatric palliative care, as well as a pediatric hospitalist, I can tell you: pediatricians are different. Much different from internists. It’s a gentleness of heart and spirit, an eternal optimism toward the world, a bruised but never relinquished hope that we really can make a difference, one child at a time. It’s what gives these people the ability to be the doctors that they are: serving kids and their families, advocating for children, and very often, retaining a certain sense of wonder at the world. These same qualities, though, when it comes to tough conversations, giving bad news, breaking the hearts of parents, do not work well. You think it’s hard to tell a wife or an adult child that the 87 year old patient is not going to recover from his cancer and that he is going to die? Imagine looking a parent in the eye and saying those same words. I think that’s why many of my colleagues, even seasoned adult palliative care providers, have looked at me and said, “Uuuuugh. How can you do what you do?” And most pediatricians’ responses? Well, let’s just say I often feel like I should relocate to the Island of Misfit Toys.
With this in mind, I am even more appreciative of any calls to action of the type in this article. End of life decision making in pediatrics is wrought with legal, moral, ethical, personal and emotional entanglements that vary widely. Attempts at creating a standard of practice, or at least suggesting one when it comes to end of life decision making for children seem so reasonable and necessary. A shining example is the work of Dr. Sarah Friebert and Dr. Kaci Osenga in creating a trigger list for perinatal palliative care consultation.3 Having these trigger lists helps raise an awareness of the need for appropriate pediatric palliative care, much like the “Check Engine” light on the dashboard alerts one to the need to do just that. Without the proper tools to look at the engine and address the issue, though, that light does little to actually fix the problem. Evidence shows us that, just like I have minimal comfort with opening the hood of my car, so do pediatric residents, fellows, and attendings themselves have minimal comfort in handling these difficult patient care situations. A study by Orgel, et al, noted that 75% of pediatric residents, 60% of pediatric fellows, 40% of pediatric attendings (general and subspecialty) felt their knowledge and comfort level in delivering bas news was “less than sufficient.” 4
What would we say if 40%
of mechanics told us they felt their knowledge level was “less than sufficient”
when it comes to helping us with that pesky “Check Engine” light? Or, what if
40% of intensivists felt their knowledge level was “less than sufficient” to
intubate a patient, or run their pressors, or place a central line?
Delivering bad news
should be a basic skill that every
physician has.5 If a physician can’t deliver bad news, how is that
physician going to deliver the bad news AND make a decision regarding code
status for a child? It doesn’t seem behaviorally congruent.
It is through articles that place a call to action, such as Clark and Dudzinksi’s, that practitioner’s are given the opportunity to reflect on their own practice, to see that there are guidelines and support structures for dealing with these gut wrenching situations, and develop a skill set for use when the need arises. We need to have the skill set so that in those complex, difficult moments of crisis, we can feel the comfort that comes with a plan. We can guide our team, our learners, and most importantly, guide and support our patients and their families.
1Several
studies in the past 20 years have found high rates of inappropriate antibiotic
prescribing practices, with one
finding that 50% of children seen by a physician for diagnosis of upper
respiratory tract infection were prescribed antibiotics. David R. Nash, MD; Jeffrey Harman, PhD; Ellen R. Wald, MD; Kelly
J. Kelleher, MD Arch Pediatr Adolesc Med. 2002;156(11):1114-1119 (Open Access)
2 For those adult
providers out there, imagine prognosticating without well validated or widely
clinically tools, fully understood disease processes, and in physiologic
organisms (children) that seem to have a resiliency beyond understanding. Drew posted a review of a prognostic tool for pediatric oncology patients. You adult providers, check out that prognostic tool and tell
me it doesn’t make you cringe a bit.
4 A Failing Medical Education Model. Faitan Orgel, Robert McCarter,
and Shana Jacobs. Journal of Palliative Medicine. June 2010, 13(6): 677-683.
doi:10.1089/jpm.2009.0338. (Subscription Req'd)
5 See also an article on the lack of training in end of life or
palliative care issues reported by neonatology fellows. Boss RD, Hutton N, Donohue PK, Arnold RM. Neonatologist Training
to Guide Family Decision Making for Critically Ill Infants. Arch Pediatr
Adolesc Med. 2009;163(9):783-788. doi:10.1001/archpediatrics.2009.155. (Open Access)
Wednesday, May 22, 2013
Twitter is changing how data can be accessed, which will more than likely lead to the demise of @tweetchat. :(
— TweetChat (@TweetChat) May 4, 2013
I am not
talking about our Wednesday 9pm EST (8pm CST /6pm PST) HPM tweetchat.
Our live palliative tweetchat conversations are alive and well since the
inaugural
tweetchat in June 2010. We would love to have you join us!
What is in a
state of demise and is going away June 11 2013 is the web service www.tweetchat.com . This is a site that easily allows you to monitor one
subject on Twitter organized around a hashtag.
I have been an avid user of the tweetchat
services when looking for specific hashtags of topics that interest me like
#HPM #geriatrics #MedEd (Medical Education) and #HCSM (Health Care Social Media). Tweetchat is simple to use and interact when
participating in live twitter chats, quickly allowing to favorite messages,
respond, retweet, access links, keeping count of the characters and even automatically
adding the hashtag to your tweet.
Tweetchat
allowed me to find my tribe of fellow palliative care professionals all over
the country and the world. Further
bonding occurred when we live tweet from a national conference like AAHPM. How
great it is to meet fellow twitter #HPM people in real life after meeting first
in tweetchat!
Ok anyways this post is not really about how great #hpm tweetchat is and how to use it, and the wonderful community. You can read that in our previous pallimed post here.
So I was
using tweetchat during the American
geriatrics society meeting #AGS13 on May
3 2013 when suddenly my beloved tweetchat was frozen with the following message:
There are over a hundred healthcare tweetchats, and many more about just anything (wine,
politics, church, etc.) so of course there were several concerned folks asking questions:
@twitter I am among the 100s of 1,000s of #twitter fans distressed by your decision re: #tweetchat @tweetchatplease let us in on why/what
— Wayne McEvilly (@waynemcevilly) May 6, 2013
While nothing replaces the website based simplicity of Tweetchat.com if you are thinking of participating in our Wednesday night weekly chats you can always try HootSuite and Tweetdeck (app based) and a newer site called oneQube has recently sprung up promising to fill the void.
Previously published on cases.pallimed.org
The next day, the patient was still unable to communicate, but was moaning and grimacing. She repeatedly tried to cough weakly to clear the copious secretions in her upper airway. The palliative care consultant recommended low doses of intravenous morphine to treat pain and shortness of breath, with a medication to clear secretions. However, Mrs. P’s attending physician was concerned that treating pain with opioids would cause respiratory depression and lead to Mrs. P’s death. The next night, the bedside nurse charted several times that Mrs. P was screaming, but they were only able to give her Tylenol for pain; she required wrist restraints to prevent her from pulling out her feeding tube. The palliative care physician was haunted by the image of the dying 92 year old woman, tied down and denied treatment for her suffering.
Discussion: Moral distress occurs when the clinician knows the appropriate action to take, but is unable to carry it out, and feels forced to give care contrary to her values. It is more often described in the nursing literature, but is beginning to come to the awareness of physicians as well. Moral distress often occurs in end-of-life situations when the decision is made to provide aggressive life-sustaining treatments that are felt to put excessive burden on patients and families.
Clinicians who see patients at the end of life may be particularly vulnerable to moral distress. For those of us who serve as consultants, our involvement in a case is at the discretion of the attending physician. In cases such as Mrs. P’s, we feel constrained by our role as advisors to the consulting physicians and the expectation of professional courtesy towards other physicians’ decisions. When we serve as attending physicians ourselves, our ability to relieve patient suffering may be limited by the family’s preference that every possible life-sustaining measure be taken.
Moral distress is also a common problem in the nursing field, particularly critical care nursing. For clinicians in any of these roles, moral distress arises when the system or other people interfere with our ability to relieve a dying patient’s suffering. In the nursing literature, moral distress has been shown to contribute to decreased job satisfaction and to burnout. The American Academy of Critical Care Nurses recommends addressing moral distress with a four-step process:
- Ask: You may not even be aware that you are suffering from moral distress. Signs of moral distress may include physical illnesses, poor sleep, and fatigue; addictive behaviors; disconnection with family or community; and either over-involvement or disengagement from patients and families.
- Affirm: Validate the distress by discussing these feelings and perceptions with others. Make a commitment to caring for yourself by addressing moral distress.
- Assess: Identify sources of your distress, and rate its severity. Determine your readiness to act, and what impact your action would have on professional relationships, patients, and families.
- Act: Identify appropriate sources of support, reduce the risks of taking action when possible, and maximize your strengths. Then you may decide to act to address a specific source of distress in your work environment.
References
1. Weissman, D. Moral distress in palliative care. Journal of Palliative Medicine. October 2009, 12(10): 865-866. (Sub Req'd)
2. Gallagher, A., (March 21, 2010) "Moral Distress and Moral Courage in Everyday Nursing Practice" OJIN: The Online Journal of Issues in Nursing Vol. 16 No. 2. (Open Access)
3.Meltzer LS, Huckabay LM. Critical Care Nurses' Perceptions of Futile Care and Its Effect on Burnout. Am J Crit Care May 2004 13:202-208(Open Access)
4. The American Association of Critical Care Nurses. The 4 A’s for managing moral distress. (Open Access)
Additional Resources:
"Moral Distress in Palliative Care Teams" presentation by Dr. David Weissman
Medical Futility Remains Leading Cause of Moral Distress among Nurses via Medical Futility Blog
Original Case by Julie Childers, MD, Edited by Christian Sinclair, MD
Originally posted at the Institute to Enhance Palliative Care,
Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in health care.
Wednesday, May 8, 2013
The Fault in Our Stars () by John Green is also about teens who fall in love and who are actually dying because they both have cancer. The book is narrated from the perspective of Hazel Lancaster a teenage girl with stage IV thyroid cancer metastatic to the lungs. Hazel uses a nasal cannula connected to an oxygen tank because her “lungs suck at being lungs”.
At the insistence of her parents she reluctantly attends a youth Cancer Support Group. “Support Group featured a rotating cast of characters in various states of tumor-driven unwellness. Why did the cast rotate? A side effect of dying.”
However things drastically change when a gorgeous boy named Augustus “Gus” Waters suddenly appears at support group. Augustus Waters is seventeen, he has osteosarcoma and had part of a leg amputated. Gus and Hazel connect and the romance slowly blossoms.
The book portrays the relationships of Hazel and Gus with each other, with their parents/family, healthcare professionals, healthy kids, and other “cancer kids” while they live their limited life the best they can. It is clear how serious illness affects the already difficult teenage years.
At the insistence of her parents she reluctantly attends a youth Cancer Support Group. “Support Group featured a rotating cast of characters in various states of tumor-driven unwellness. Why did the cast rotate? A side effect of dying.”
However things drastically change when a gorgeous boy named Augustus “Gus” Waters suddenly appears at support group. Augustus Waters is seventeen, he has osteosarcoma and had part of a leg amputated. Gus and Hazel connect and the romance slowly blossoms.
The book portrays the relationships of Hazel and Gus with each other, with their parents/family, healthcare professionals, healthy kids, and other “cancer kids” while they live their limited life the best they can. It is clear how serious illness affects the already difficult teenage years.
Below are some “palliative” and quality of life (love) related quotes from the book:
- “Depression is a side effect of dying.” Hazel
-
“Oh, I wouldn't mind, Hazel Grace. It would be a privilege to have my heart broken by you.” Gus
Okay
- “Maybe 'okay' will be our 'always”
- “You gave me a forever within the numbered days, and I’m grateful.”- Hazel
- “That’s part of what I like about the book in some ways. It portrays death truthfully. You die in the middle of your life, in the middle of a sentence”
Ok so now I’m a fan of John Green and he calls his fans “nerd fighters”. I really loved TFIOS and I wanted to keep getting more!
So here are other things you can do (save some for after reading the book):- You can follow John Green on twitter @realjohngreen
- You can follow John Green on youtube and watch some quirky videos
- Listen to the The Fault In Our Stars Music Video inspired by TFIOS book by Troye Sivan.
4. Read the lyrics of the song in #3 they are just inspiring.
5. You can re-read TFIOS wonderful quotes here. (spoiler alert )
6. Read the Q & A with John Green about TFIOS (spoiler alert)
7. Gather some friends and have a book club. (spoiler alert)
8. Learn about Esther Earl, to whom TFIOS is dedicated. Esther was a teenager who had Thyroid cancer and developed an online community of friends by video blogging. Esther was a nerdfighter who died of cancer in August of 2010. She and John Green were friends. Watch Esther's YouTube videos here and learn about the organization her family set up in her memory.
Below is a video of John Green with Esther
John Green Announces Esther's death
1. The fault in our stars good reads review. (Accessed May 8, 2013, at http://www.goodreads.com/book/show/11870085-the-fault-in-our-stars.)
2. I fell in love the way you fall asleep. drawing. (Accessed May 8, 2013, at http://incredibru.deviantart.com/art/I-fell-in-love-the-way-you-fall-asleep-361844486?q=gallery%3Aincredibru%2F32037977&qo=8.)
Wednesday, May 8, 2013
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