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by Michael Pottash (@mpottash)

Comfort Care, whatever does that mean? This is the important question asked by my colleagues Anne Kelemen and Hunter Groninger in the September 2018 issue of JAMA Internal Medicine. The term is ubiquitous and its interpretation influences how patients with end stage illness are cared for at the end of their lives. In their article they argue that the language of Comfort Care is confusing and easily misunderstood. They suggest improving the understanding around end of life care and moving to a less ambiguous term for care of the dying. I worry that any term to describe dying care will always be problematic.

So what is Comfort Care? One common definition comes from Blinderman and Billings, writing in the New England Journal of Medicine, defining it as “the most basic palliative care interventions that provide immediate relief of symptoms in a patient who is very close to death.” Another is from the National Institute on Aging, describing Comfort Care as “care that helps or soothes a person who is dying ... to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person’s wishes.” Both definitions are simple enough, and yet lack any specifics or direction for clinicians. This leaves the practice of Comfort Care up for interpretation.

Kelemen points out the pitfalls in operationalizing this vague term. First, it promotes a dangerous misconception that clinical care is binary and that patients must choose between focusing on comfort or not. Second, Kelemen cites a study demonstrating that while the term is ubiquitous, clinicians don’t actually know what it means. This leads to ambiguity around what kinds of medical interventions constitute Comfort Care and to a wide disparity in which medical interventions clinicians apply under the circumstance. Worse, some seem to think that it means methodically titrating up an opioid infusion: “Nearly half [of surveyed physicians] expressed a belief that Comfort Measures Only care is itself an indication for more aggressive opioid administration than for other patients, regardless of clinical condition. This is of concern because it seems to obviate the critical need for nuanced assessment that drives symptom management.” Administration of inappropriately high dose opioids will hasten death; this is at best bad medicine and at worst euthanasia.

Blinderman agrees:

“However, the term is often used in a misleading or imprecise manner — for example, when such care is automatically considered equivalent to a do-not-resuscitate order and, perhaps even without discussion with the patient, is extrapolated to mean the exclusion of a full range of palliative measures appropriate for a dying patient. Rather than simply writing orders for “comfort care” (or “intensive comfort measures,” the term that we prefer), the medical team should review the entire plan of care and enter explicit orders to promote comfort and prevent unnecessary interventions.”

A Pallimed post by Drew Rosielle from 2016 made a similar protest:

“One, it amplifies the already irksome and unnecessary dichotomy we have set up in medicine between 'cure' and 'comfort’... What we are trying to do in palliative care is to reduce the gap between the two, to help our patients feel better as they live longer… Two, it's confusing for patients and should never be said in front of them. I've seen it lead to stupid miscommunication many times. Like someone asking a patient 'Do you want comfort care?' 'Do you want us to focus on keeping you comfortable?' and the patient saying 'Yes of course' not realizing that the clinician was actually saying 'Should we stop efforts to prolong your life and *only* provide ongoing interventions to alleviate symptoms/provide comfort?'”

To summarize: Comfort Care is confusing to patients and families, no one knows how to provide it, and it can be harmful.

Here is the kicker from Kelemen:

“End-of-life care plans must be specific to the patient and family, reflecting their values and goals for that critical event and universal experience. To highlight this, we coach colleagues and families to consider every therapeutic intervention—for example, each medication, laboratory test, imaging study—and evaluate whether that intervention promotes the goal of alleviating symptom burden during the dying process. If it does (eg, oxygen administration in hypoxia), we continue it; if not (eg, the ubiquitous statin therapy), then perhaps it could be discontinued after reassuring communication with patients and families.”

Let’s treat dying patients as we would treat any patients: as thinking clinicians. Continue treatments that meet the goals of the patient and family, and discontinue treatments that do not. If the goals of the patient and family are to prioritize symptom management over life prolongation then ask the question of every test, intervention, or medication: Does this promote quality of life? Some life-prolonging interventions can be continued without impacting quality, if the patient so chooses. This will all depend on the patient’s preferences and the clinical context. That is why it is impossible to create a Comfort Care algorithm, bundle, or pathway - clinical reasoning is still required.

While my colleagues believe that we should use clearer language or work towards a unified understanding of Comfort Care, I would argue that we should get rid of it altogether. Do we need a term for taking care of dying patients in the hospital? If it does not indicate a clinical pathway or answer an urgent clinical question, then what is its benefit? Rather, in my experience, I have only seen it cause confusion, miscommunication, and unethical medical practice. Kelemen has identified a crucial blind spot in our collective medical practice, one that I fear is a symptom of a general misunderstanding and discomfort with how to care for the dying. Let’s teach our trainees to continue reasoning through clinical decisions to the end of a patient’s life, and to provide good medical care even if all that entails is sitting at the bedside to hold their patient’s hand.

Disclosure: Anne Kelemen and Hunter Groninger are dear friends and colleagues.

Michael Pottash MD MPH is a Palliative Medicine Physician at MedStar Washington Hospital Center and Assistant Professor of Medicine at Georgetown University School of Medicine. He is currently very curious to know who will end up sitting on the Iron Throne.

References

1 Kelemen AM, Groninger H. Ambiguity in End-of-Life Care Terminology - What Do We Mean by Comfort Care? JAMA Internal Medicine. 2018

2 Blinderman CD, Billings JA. Comfort Care for Patients Dying in the Hospital. New England Journal of Medicine. 2015.

3 National Institute on Aging. Providing Comfort at the End of Life. Accessed 2018. 4 Zanartu C, Matti-Orozco BM. Comfort Measures Only: Agreeing on a Common Definition Through a Survey. Am J Hospice and Palliative Care. 2013

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by Drew Rosielle (@drosielle)

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

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

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

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

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

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

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

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

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

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

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

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

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



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



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

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

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

We’re the problem, not the families.

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

I get it; this is complicated.

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

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

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

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

References

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

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by Drew Rosielle (@drosielle)

It just gets worse and worse for the idea that antipsychotics have efficacy for delirium.

Last year I posted about the RCT of haloperidol, risperidone, or placebo for delirium symptoms in 'palliative' patients. I'm pretty sure I called for more controlled, 'high quality,' trials, and we are lucky enough to have another.

This one is a randomized, double-blinded, registered, controlled trial of haloperidol, ziprasidone, or placebo for ICU delirium, just published in NEJM.

The trial took place in a geographically diverse group of US-based intensive care units. They enrolled adult patients in medical or surgical ICUs, who had delirium detected by the CAM-ICU (a well-validated tool: lots of info on it here if you want to read more). They did something interesting - they consented patients for the study (some of them at least) before the onset of delirium.  They also did prospective, broad case-finding, using research personnel to evaluate patients twice daily to see if delirium was present or not. They did not rely on clinical personnel in the ICU to identify delirium but instead proactively found them, which is a nice touch given how under-recognized delirium can be. My sense is that they consented patients rapidly upon admission to the ICU (or their surrogate), then followed them closely to rapidly identify those who developed delirium.

Once delirium was identified, patients were randomized to 2.5mg of haloperidol or 5mg of ziprasidone (or matching placebo) IV, then q12h. (Older patients received lower starting doses.) The dose of the study drug/placebo was doubled with each subsequent dose if the patient did not improve up to a maximum of 20 mg a day of haloperidol or 40 mg a day of ziprasidone. They halved the dose of the drug if a patient later had no delirium per the CAM-ICU, or stopped it if a patient was on the lowest dose already, or if the patient had 4 consecutive assessments indicating no delirium. Regardless, the trial drug/placebo was stopped at 14 days or ICU discharge if the patient made it that far and was still delirious.

The primary endpoint was days alive without delirium (per the CAM-ICU) or coma.

566 patients underwent randomization, 89% of those had hypoactive delirium. Median age was around 60 years old, 43% female, ~83% were white.

The median duration of exposure to a trial drug/placebo was 4 days, with the mean daily doses of 11 mg of haloperidol and 20 mg of ziprasidone.

Active treatment did not seem to do anything. The median number of days alive without delirium or coma was the same in both groups (8.5 vs 8.7). Secondary outcomes were similar between 'active' and placebo groups too - 30 and 90-day survival, time to discontinuation of ventilation, time to ICU discharge, ICU readmission, time to hospital discharge -- all the same.

Safety endpoints were the same across groups too with the exception that QT prolongation was more common in the ziprasidone group (it's not clear to me if this was statistically significant or not). Other side effects, including excessive sedation, were no different between placebo and the study interventions.



What does all this mean?
At the end of the day, I think it underlines the idea that antipsychotics have no routine role in the management of delirium.

It took me a while to accept this, but at this point I'm looking for any compelling data to suggest otherwise. We just don't have it, and I've mostly stopped prescribing antipsychotics for delirium. While any study like this has elements you can pick apart (e.g., I wouldn't exactly dose haloperidol like they did), at the end of the day they used reasonable doses, doses that I have commonly used, and they allowed relatively high doses to be used (this was not a study of super careful, wee doses). They identified the patients prospectively and rigorously - I don't think it likely that we're going to see a substantially better-designed study in the near future than this.

Notably, most of these patients had hypoactive delirium, and they did not break down their findings by patients who were hyperactive vs hypoactive. I imagine some people are going to argue that they should have done that but overall I'm glad they didn't. It was only 10% of their subjects, and it's better they didn't data-mine their findings that way. It could have been a prespecified analysis, which as far as I can tell it was not, and the study wasn't powered to detect differences between so few subjects, and so I'm glad they left it be.

I think it would be reasonable to argue that we still really need a similarly well-done, large, study only for hyperactive ICU delirium - I think we do - but I also don't see any reason any of us should advocate for the idea that antipsychotics are effective for hyperactive delirium in the meantime. They might be, but I don't think that's very likely personally. If someone does it, I really hope they include quetiapine as one of the arms, as it's used a lot around many institutions, and I suspect for the worse (although I truly don't know), and would welcome any good data on it.

At this point, I think a lot of the perceived benefits people have of antipsychotics is that they sometimes sedate people, even if only mildly at times, and so patients 'look better,' but we've actually done nothing to modify the course of their delirium or improve their cognition.

Sedating someone can sometimes be a perfectly reasonable/helpful/legitimate therapeutic outcome: for very agitated patients who may pose a risk to themselves, or for patients very near the end of life for whom our care goals are really centered on preventing and actively minimizing any sources of suffering.

But it's not a great outcome for most of our other patients, and like a lot of things we deal with (eg, cancer-associated appetite disturbances and muscle loss) delirium is a complex phenomenon and needs complex interventions to prevent/mitigate, and perhaps the entire idea that there is a 'right drug' (or drug class) to help it was wrong all along.

For more articles by Drew Rosielle, click here. For more articles about delirium, click here. For more articles about the ICU, click here.

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

Reference
1. Girard TD et al. Haloperidol and Ziprasidone for Treatment of Delirium in Critical Illness. N Engl J Med. 2018 Oct 22. doi: 10.1056/NEJMoa1808217.

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by Lori Ruder

March 19 is Certified Nurses Day, a day set aside to honor nurses who improve patient outcomes through certification in their specialty. The American Nurses Credentialing Center (ANCC) states: “A registered nurse (RN) license allows nurses to practice. Certification affirms advanced knowledge, skill, and practice to meet the challenges of modern nursing.”

As an ICU nurse, I see the challenges of modern nursing as witnessing sicker patients undergoing extreme measures; attempting to extend the length of life but not necessarily the quality of life. ICU nurses have 24/7 intimate contact with their patients. More times than not, I have a direct hand in implementing these extreme, often painful measures, leading to moral distress.

While most ICU nurses choose a Critical Care Registered Nurse certification (CCRN), I chose a certification with a primary aim to improve the quality of life for my patients and families: the Certified Hospice and Palliative Nurse (CHPN). Palliative care focuses on holistic care of patients and their families, including management of physical, psychosocial and spiritual symptoms, as well as communication about patient and family concerns and how treatment aligns with each patient's values and preferences. ICU patients have serious and life-threatening illnesses requiring advanced care. These serious illnesses and the intensive care they require can cause critically ill patients to suffer from a variety of distressing symptoms including pain, dyspnea, delirium, fatigue, and anxiety. This advanced care frequently transitions to end-of-life care. I regularly see patients transferred to my unit when other measures are exhausted, when we are the last hope against the inevitable. Witnessing these symptoms and the difficult decisions made during the transition can cause families significant distress and remorse.

I have often said that I am a Certified Hospice and Palliative ICU nurse because many times my most critical care goes to the ones who are left behind. My certification in palliative care enables me to gently guide patients and families through the illness and the transition to end-of-life care. It allows me to simultaneously provide comfort and life-saving measures: concurrent critical care and palliative care, just as it can and should be. When I feel my patients and families aren’t getting the care they deserve, my CHPN credentials give me the knowledge base, confidence, and voice I need to advocate for them.

My certification also serves as an outreach for hospice and palliative care. My name badge has a noticeable yellow card behind it that says “LORI, CHPN”. The purpose of the card is to easily identify a nurse’s first name and certification. I am often asked by my patients’ families what the “CHPN” stands for. In this death-avoidant ICU culture one might hesitate to mention the words “hospice and palliative care”. I do not. I proudly explain the meaning of my credentials and their purpose: to provide expert symptom management and to guide my patients and families through serious illness while focusing on quality of life. By the time I am asked what my certification means, they have already witnessed me working to keep their loved one alive. They have already begun to trust me and know my intentions are good. They have seen me celebrate the good news, encourage their hope, and wish for their miracle. They see me on their team, hoping for the best while preparing them for the worst. Year after year nurses are voted the most trusted profession. What better way to demonstrate the importance and the good of hospice and palliative care than to have more bedside nurses with CHPN credentials?

On this Certified Nurses Day, I encourage any nurse who cares for patients with serious illness and who would like to see more care focused on quality of life to consider certification in hospice and palliative care. I believe we can have a hand in changing the culture of healthcare. The CHPN is the preferred nursing certification of the Hospice and Palliative Nurses Association (HPNA). If you are interested in learning more about this certification and others offered, please visit the Hospice and Palliative Credentialing Center.

Lori Ruder, MSN, RN, CHPN is an ICU nurse at University Hospitals Cleveland Medical Center, where she was the first ICU RN to attain certification in Hospice and Palliative Care. This certification has improved not only her care of patients and families, but also her job satisfaction. You can find her on Twitter @LoriRuder.

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By Lori Ruder

He moves over and she snuggles in close to her fiancé. She pulls their blanket over them. A special blanket made just for this moment. “I love you” she murmurs, soaking in his face and his warmth. “Goodnight lovebirds,” his mother teases as she turns out the lights.

This moment is both tender and tragic: tender because they are demonstrating their love for each other, tragic because this is happening in the ICU.  Her fiancé is on life support and he is dying. He moved over because I moved him over to make room for her in his narrow hospital bed. I repositioned his ventilator tubing and central lines out of her way, closed the side rail behind her for support, and helped her pull their blanket over them. This blanket was made by ICU nurses for moments like this: to have something to offer when medicine doesn’t.

Using our own time and money, we gather together to make blankets. We make them in many colors and patterns, to match the many styles that come from all walks of life. They are simple fleece tie blankets, the kind a Girl Scout might make, but they are soft and warm. They are something soft amidst the harsh reality of critical illness and death, and something to provide warmth and comfort--to touch a loved one during last moments as if to capture their essence before they are gone. The blankets are a memento of touch to take with them when they leave this place and their loved one behind.

We give our blankets when we know the end is coming, after
the “I wish we had better news” has been said. And sometimes we give our blankets when it hasn’t been said yet. We know when it’s time usually before anyone else, before the family realizes or the physicians are ready to admit. We give them at our discretion; we do not need an order.

We have blanketed older patients so that husbands or wives of many years will have something that remains. We have covered a young mother dying from cancer with two, one for each of her preschool-aged children, so when they don’t have memories of their mother’s arms around them they will have her blanket and know it came from her. We provide markers so that those coming to say goodbye can write a message of love. When the patient dies we leave it to the family to decide where it goes. Some choose to leave it behind. Some choose to keep it with the patient after death. Many take it home with them. It is our gift of love in a time of sorrow, and how they choose to accept it is honored. Our hope is that these blankets will warm their hearts and cloak their grief.

“Blanket” defined as a verb means “to cover completely with a thick layer of something.”  Synonyms include “cover,” “shroud,” “swathe,” “envelop,” and “cloak.” By using the term “cloak” my intention is not to cover or obscure grief, to pretend it isn’t there. By using the term “cloak,” I am referring to the Latin origins of the word, “pallium,” now in its current English form as “palliate.”  To palliate means to make something less severe, to ease and soothe, without removing the cause. Our intention is to hopefully make grief less severe, to ease it in some small way through a simple gesture of cloaking the dying with a blanket created from caring.

On this particular night my patient already had a blanket, one that had been autographed with messages of love, one that had covered him and his mother earlier when she moved in close to say tender goodbyes. But I realized he had two important women in his life who needed comfort. His mother, who loved him before his birth and never left his side, and his devoted fiancée who dreamed of a future with his own children that would never come to be.

I took her out to our supply of blankets to choose the one just right for them. She instantly liked a light green one with polka dots.  Although she was hoping for purple, his favorite color,our selection didn’t offer a purple one that was masculine enough for the strong man she knew. I told her, “He loves you. He’d be happy if you chose the one you really like.” And so it was the light green one that she snuggled under close to him, sleeping peacefully while his heart took its last beat. It was the green one that she clutched to her chest after he died, her face a blank slate of shock and disbelief. It is the green one that I pray she still holds tight in her time of grief, feeling the same sense of closeness and tenderness she felt on their last night together.

It was a simple fleece blanket, tied together by ICU nurses who bear witness to much suffering, sadness, and loss. It was something to offer that didn’t cause pain and only provided warmth and comfort. These blankets are tied together by our sincere desire to palliate the heartbreak of our patients’ families and, selfishly, our own.

Lori Ruder MSN RN is a Certified Hospice and Palliative ICU nurse in the Medical Intensive Care Unit at University Hospitals Cleveland Medical Center.  Many times spoken words can’t give her heartfelt and heartbreaking experiences justice, so she writes them to remain resilient.  If you’d like to summon your inner Girl Scout and help the cause you can find her on Twitter @LoriRuder.

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by Christian Sinclair

August 2016 has left the building along with a lot of heat, rain and wildfires.

Here is a recap of all of our posts from August 2016. We know there are some you may have already bookmarked, but forgot to read, or maybe you liked it so much you want to share it again.

Make sure to follow, engage, like and comment with us on Facebook, Twitter, Google+, Pinterest, Tumblr, Instagram and LinkedIN.  We always appreciate it when you recommend us to your peers and social media makes it very easy!

Communication

• Palliative Chemotherapy: An Oxymoron by Rebecca Gagne Henderson

Humanities/Media Reviews

• Redefining "Death in Dignity": Sherwin Nuland's 'How We Die' by Vivian Lam

Interview/News

• Behind the Scenes: Media Watch by Barry Ashpole

Narrative/Opinion

• What happens when it is you? by Michael Fratkin

Research/Education

• August 2016 Journal Review by Christian Sinclair
• Trisomy 13 and 18: When a lethal condition is no longer lethal by Jenni Linebarger
• Worse than Death? ...Dependence by Ross Albert
• FOUR Score: Coma scales and prognosis in the ICU by Drew Rosielle

Comment Shout-out's for July (in no particular order):
Clay Anderson, Drew Rosielle, Lyle Fettig, Anthony Back, Lizzy Miles, Gerg Gifford, Kyle Edmonds, Kathy Kastner, Karl Steinberg, Lynne Kallenbach, Emilie Clark, Robin Kleronomos, Anthony Herbert, Tom Quinn, Karen Kaplan, Lisa LaMagna, Sidnee Weiss-Domis, Daniel Miller, Robin Youlten, Rebecca Gagne Henderson, Linda Dolan, Andy Probolus, Amy Getter, Alex Smith, Gerald Tevrow, Elizabeth Lindenberger, Vikranta Sharma, Elaine Glass, Matt Rhodes, Vickie Leff, Paul Rousseau, Emily Riegel, Will Grinstead, Jeanne Phillips, Staci Mandrola, Julie Koch, Michael Pottash, Thomas Reid, Pippa Hawley, Kat Collett, Michael Fratkin, Julie Christenson and a few anonymous people.

Highlighted Comment for August 2016
Frustrations with words not living up to their promise continue to be a theme this month. Thomas LeBlanc had a great comment on the challenges with the term palliative chemotherapy.

Let’s not throw the baby out with the bathwater; the best way to palliate cancer-related symptoms is to actually treat the cancer (if it’s treatable, and if the patient is not too frail to tolerate the treatment). The enemy here isn’t the chemotherapy, it’s the inappropriate use of it in patients who are too ill, or who have resistant disease, or whose goals can’t be met by the treatment. The enemy isn’t the chemotherapy, it’s the notion that patients should be forced to choose either cancer treatment or good palliative care. Instead, I believe they should be able to get both, and we should all work together as a team, oncologist and palliative care clinicians alike, to do what’s best for each patient at each step along the way.

Social Media Highlights

• Most popular Pallimed Facebook post: Condoloneces to Amedisys hospice on the death of Bill Borne - Reached 15k+ people
• Most popular Pallimed Twitter post: We need to be frank about death with terminal patients via @newsweek - 91 Engagements
• Most popular Pallimed Instagram Post: "That's all I wanted: for someone to look at me and listen to me, but in some beautiful and artisitc way." - Gene Wilder - 453 impressions

"That's all I wanted; for someone to look at me and listen to me, but in some beautiful or artistic way." - Gene Wilder #genewilder #willywonka #quotation #quote #hpm #hapc #palliativecare #listening

A photo posted by Pallimed (@pallimedblog) on Aug 30, 2016 at 1:11pm PDT

Passionate Volunteers and Writers Wanted
Do you love hospice and palliative medicine? Got something to say or find interesting things to share? Want to reach nearly 40,000 people with your ideas? We do this with a volunteer staff of ten, but we could use more regular volunteers.

If you are interested in writing for or working with us at Pallimed please check out the Pallimed Opportunities page and complete the form at the bottom. If you want to help we have something you could do! Like write this simple monthly review post (this would be really easy to hand off)! Or join our team of social media ambassadors to help run one of our social media accounts (especially with Facebook, Pinterest, LinkedIn, Instagram and Tumblr) - we do on the job training!

Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas Medical Center and editor of Pallimed. When not advocating for health care professionals to use social media you can find him playing board games.

Image Credit: Lionello DelPiccolo via Unsplash CC0 1.0

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by Drew Rosielle

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

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

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

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

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

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

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

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by Drew Rosielle

(This is the second of four posts by Drew on the language we use in hospice and palliative care. You may want to read his reflection on 10 years of practice or his first post on euphemisms - "Comfort Care." - Ed.)

Euphemistic phrase #2 that I'd like to never hear again: "Compassionate extubation."

By which people typically mean 'extubating someone who is on invasive mechanical ventilation who is not expected to survive long, to a plan of care that focuses on symptom alleviation.'

What bugs me about it is the use of the term 'compassionate' to try to encompass the idea of a dying patient, care goals focused on symptom alleviation and providing a comfortable death, etc. One could totally lack any compassion for a patient and agree to extubate them expecting them to die, based on a purely legalistic interpretation of contemporary medical ethics (patients have a right to say No, etc), and proceed to 'compassionately extubate' the patient, right? Compassion needn't enter into it.

I also dislike, and I have to admit this is a really visceral thing for me, the claiming of the mantle of 'compassion' for things we do in palliative care. It can imply that other things in medicine aren't compassionate, or are less so than us pallatieurs. Is the ED doctor who diagnoses your mother with severe hypoxemic respiratory failure from community acquired pneumonia and intubates her in the emergency department in order to save her life lacking in compassion? Is the critical care team who cares for a patient through ARDS into recovery, and extubates the patient to a facemask and ongoing aggressive management to, you know, save their life, lacking in compassion when they do that? Why do we need to add valorizing, morally-laden language to this act when we do it? Why not just 'discontinuing mechanical ventilation with a plan to keep a patient comfortable as they die?' or some such variation. I know, I know, it's too much of a mouthful, but if you don't object to 'comfort measures only' as discussed in Part 1, you could say "Discontinuing mechanical ventilation to a CMO plan of care' etc.

There are also variations 'palliative extubation,' or, god-save-us-all 'palliative liberation from the ventilator' etc.

(See the discussion on 'palliative sedation' in part 3 for why I don't like using 'palliative' in these contexts. In short, we do a lot of things in palliative care, and I don't see how it clarifies anything or helps anyone to associate our name which is already used in a bajillion different ways to this practice.)

What I dislike about 'liberation' is that is it unnecessarily moralistic. Why even introduce such a judgement? This is a technology which saves countless lives every year, not something to be 'liberated' from. If someone is receiving mechanical ventilation and it becomes apparent that it is not going to help them survive, or be a bridge to an acceptable recovery, or otherwise is against the patient's wishes/values, then we stop it, and provide appropriate ongoing medical care. Let's just say that, not that we are heroically 'liberating' patients. That's how it reads to me, as unnecessarily heroic.

I know some, patiens/families view it as a liberation and that's fine, that's a good thing, but that doesn't mean we should routinely call this event a liberation. Some patients quite happily call it 'pulling the plug' which doesn't mean I'm about to call it taht. Imagine the family who is agreeing to the vent being stopped but remain ambivalent, conflicted, worried are they doing the right thing, the moral thing, the loving thing and a doctor blithely walk in and start talking about doing this thing which will lead to their loved one dying quickly and you don't want them to die but in your heart know it's time and you've got to let this happen but it's so tough and the doctor starts calling it a 'liberation.' I'd be like W-T-F?? if I was that family member.

There's also the phrase 'terminal extubation.' I don't use it, but it bugs me less than 'compassionate' or 'palliative' extubation, because I think it's less euphemistic. However it's still not clear, not precise, could be interpreted many ways, so not so helpful. 'Discontinuing mechanical ventilation' is just fine.

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


Illustration Credit: Christian Sinclair CC-BY-SA-NC

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Photo by John Flannery via Creative Commons

By Lori Ruder

Who wants to tell someone their loved one is dying?

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

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

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

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

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

Who would want to tell them their son was dying?

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

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

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

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

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

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

Who would want to tell them he was dying?

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

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

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

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

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

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

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by Christian Sinclair

This week's JAMA is focused on end-of-life care with topics ranging from hospice, ICU, POLST, how doctors die, physician-assisted death and more. Our plan is to take some time and review this issue and bring you analysis from your fellow clinicians. If anyone is interested in helping write a review of any part of this issue, please contact editor@pallimed.org with the article you would like to focus on.

We start with an analysis of the two research letters that look into the anecdotal claims that doctors choose different goals at the end-of-life and therefore die differently than the general population. Popularized by a 2011 essay "How Doctors Die" by Dr. Ken Murray, and shared widely on social media, it is good to see research to match with the stories we may hear.

Keep an eye on this space in the next several days as we post more pieces.


Christian Sinclair, MD, FAAHPM is editor of Pallimed and president-elect for the American Academy of Hospice and Palliative Medicine. He sees patients at the University of Kansas Medical Center in Kansas City, KS.

Image credit: JAMA Cover for Jan 19, 2016

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by Kristina Newport

Year 2 of the Palliative in Oncology Conference was a repeat success, with an attendance of over 650 practitioners, more sessions and a new format. A significant difference was the addition of patient advocates who gave their perspective on the topics discussed. Below are some pearls in three main areas, Communication, Symptom Management and Integration of Palliative Care. Check out the Symposium Program for a detailed schedule of the meeting.

COMMUNICATION

The meeting opened with discussion of novel communication aids that incorporate technology to improve communication and shared decision making. James Tulsky MD, known for his work in the area of physician-patient communication, shared a computer based training program that helps oncologists to better respond to negative emotions, a program that will soon be available for all US oncology trainees. He pointed out that “See one, Do one, Teach one” only works if you have somewhere to look, and effective communication education includes observation, practice and goal-directed feedback.

Dr. Vicki Jackson's slide on integration

Areej El-Jawahri MD presented her impressive work showing seriously ill patients who viewed a video about CPR and intubation were more likely not to want these treatments, be better informed about their options, have orders to forgo CPR/ intubation, and discuss preferences with providers.

Angelo Volandes MD MPH further emphasized the benefit of visual aids, introducing the ACP Decisions video library, including an informative (and free) video to introduce palliative care that made me want to receive palliative care immediately, despite being healthy! Joanna Paladino MD described her work on the Serious Illness Conversation guide. The work demonstrates that a tool to prompt conversations reduces patient anxiety while facilitating discussions in the setting of serious illness.

Paula Rauch, MD and Kathi Mooney PhD, RN discussed the effect of illness on children and the need to intentionally communicate and care for them in these instances. We were reminded “Just be honest” is not quite enough guidance for parents and children want to know when a parent’s death is approaching. I also loved hearing of the “Living Legacy” where friends and family plan ahead to be a part of special moments in the child’s life, ensuring a piece of the lost loved one lives on.

SYMPTOM MANAGEMENT

Howard McLeod, PharmD gave an informative talk that, if not already convinced, left me certain that Palliative Clinicians need to be well-versed in the role of bio-markers in patient care. He discussed the tailoring of treatments for effectiveness and side effects, and translating the science into something that is meaningful to the patient. I’m convinced we will all need to review our immunology textbooks so we can keep up with appropriate treatments!

Multiple presentations were given on cachexia, discussing mechanisms and potential treatments. The most promising was Jennifer Temel MD’s work on the ROMANA I and II trials, showing significant increases in lean body mass and body weight in patients with advanced non–small cell lung cancer (NSCLC) and cachexia who used anamorelin (not yet available in US) compared with placebo. Susan McClement, RN, PhD and Charles Loprinzi, MD addressed the patient side of cachexia, reminding us nutrition and hydration carry significant meaning to patients and families. For now, appetite stimulants don’t improve quality or quantity of life, so our role should include a focus on managing expectations.

Another medication we may hear more about is aprepitant, an expensive enti-emetic that helped to decrease cough frequency in lung cancer patients, as shown by Amelie Harle, MD who used their Manchester Cough in Lung Cancer scale for objective measurements in the study.

Brian Schmidt MD discussed mechanisms of cancer pain, noting destruction of tissue and compression of nerves is not the full explanation of cancer related pain. He notes nerve recruitment and increased pain is prognostic, serving as bellwethers and sensors embedded within the cancer. Talks on the use of radiotherapy for malignancy symptoms emphasized the Choosing Wisely initiative elements, with an emphasis on fewer fractions for palliative patients. This sometimes results in the need for retreatment, but does not increase symptoms as some might believe. Alternative treatments were also discussed this year, in a breakout session, with discussion of massage, acupuncture and music therapy.

INTEGRATION OF PALLIATIVE CARE

Marie Bakitas DNSc, APRN, NP-C, AOCN, ACHPN presented the third ENABLE trial showing early, phone based palliative care interventions decreased depression in caregivers and improved survival of advanced cancer patients when instituted early. This adds to the increasing literature that early, integrated palliative care can increase life expectancy, and caregiver stress when initiated in the appropriate patients at the appropriate time.

Kathleen Foley MD took a wider view at integration of palliative care with a look at the worldwide stage, discussing her passion of bringing symptom management to low resource areas, believing “pain control is a human right”.

Dr. Campbell's slide on palliative Care in the ICU  (Apologies to the man sitting in front of me!)

Margaret Campbell, PhD, RN, FPCN discussed appropriate identification of patients in need of palliative care, opening with a story of a patient for whom she was consulted so late that she asked “Are you consulting me to come and pronounce this patient?!” She advises us to identify patients based on their unmet needs, not based on their risk of dying. She emphasized the role of primary palliative care in the ICU, outlining the necessary elements in Table 3 of their paper, emphasizing advance care planning discussions early in the hospitalization.

Spirituality was touched upon by Michael Balboni and Jonathon Marron, demonstrating the need for the medical team, including the interdisciplinary palliative team, to have direct conversations, since community clergy interactions and hope for miracles tend to increased aggressive care.

A highlight on the second day was Vicki Jackson’s keynote presentation on effective care integration and the co-management model. She emphasized the need for Palliative and Oncology clinicians to understand (and respect!) each other and develop prognostic awareness. She notes that dedicated palliative clinicians may not be available, but other members of the oncology team may play the role of a palliative provider. She asks palliative clinicians not to “vilify the oncologist” (here, here!) and identifies “Prognostic awareness” as a key area for Palliative and Oncology collaboration, emphasizing that is not a one-and-done event, it must develop over time.

As the collaboration of Palliative Care and Oncology increases across the country and the globe, I’m excited to be a part of the conversation by attending and participating in meetings like this one. I hope to see increased participation at next year’s symposium, in San Francisco September 9-10, particularly from members of the interdisciplinary team. Thank you, AAHPM, ASCO, ASTRO and MASCC for another great opportunity to learn and share with our colleagues.

Kristina Newport MD (@kbnewport) practices Hospice and Palliative Medicine in Lancaster, PA where she also spends time running after her children, 4 and 6.

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This could be my ICU, where I have spent many hours (daylight and otherwise) in front of those plate glass windows, both as a resident making frantic adjustments to drips and vent settings, and as a palliator working to be the only non-frantic entity in the room. Her description of the physical setting makes me catch my breath: what else did the game designers capture? Jenn Frank, the reviewer of the game, goes on:
This stops me in my tracks. What she describes is likely immediately familiar to all of us working in this field: the false hope of “success”, the fatigue, the fear. The creator Ryan Green (@RyanGreen8) describes the game as primarily about hope, something that seems so slippery to me in the ICU. I start thinking about the audience for this game. It has always seemed to me that the caregiver experience in the ICU must be excruciating regardless of the outcome; who would want to relive that? 

But then it occurs to me that perhaps the real value of That Dragon, Cancer is not for those who have survived the dragon, but those who have yet to face it. Or those who have just learned of the existence of the dragon in their own life. If you could prepare yourself for the hardest thing you will ever go through, if you could practice it by experiencing a fraction of it ahead of time, would you want to? Would it help?


A few weeks ago, I sat in the conference room of our ICU, across from a family whose mother was dying in the room next door. They were weighing whether to continue aggressive treatment or to withdraw life support and allow a natural death. The patient’s daughter and DPOA said tearfully “I think I know what my mother would want, but I’ve never had to make this kind of decision before. It’s not like you get to practice these things.”

In that moment, I couldn’t help but think of the video game, of the artificial ICU in the game and the emotions it was able to evoke in one who had experienced the real thing. And I couldn’t help but think, what if this family had practiced this hardest thing before? Would it have helped? I don’t know the answer, but it has shown me that perhaps interpersonal dynamics are more translatable to a virtual reality than I had supposed. What other digital tools might be out there waiting for us?



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