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by Elizabeth Lindenberger

I know I am not alone in my disappointment this week with the authors’ conclusions in “Effect of Palliative Care-Led Meetings for Families of Patients with Critical Illness: A Randomized Clinical Trial.” The study intervention involved the provision of an informational brochure and two focused meetings specifically designed to provide families with information about prognosis. The study found no difference in most outcomes between usual care and the intervention, and PTSD symptoms were in fact increased in the intervention group. The authors concluded that "these findings do not support routine or mandatory palliative care–led discussion of goals of care for all families of patients with chronic critical illness.” What? How does this very specific, targeted intervention that deviates dramatically from usual palliative care practice become equated with palliative care?

As a palliative care physician at Mount Sinai, I participated in this study. I am not surprised by the negative results. These family meetings were highly scripted, designed to provide information about prognosis, and rarely involved the primary team. The study had great potential to make a contribution to the practice of critical care medicine, specifically to answer the question of whether offering prognostic information earlier in the critical illness trajectory could benefit patients and families. However, the study was designed such that the informers were not the patients' treating physicians. In fact, ICU team physicians participated in only 3-8% of meetings. Palliative care providers were chosen to given the information because of their expertise in communication. And yet nothing about the intervention resembled a standard palliative care intervention, which would have involved the entire IDT, multiple meetings for relationship building, information provided only when welcomed by the family, and the 100% presence of the ICU treating team at the meetings.

I remember back to one particularly distressing family meeting spent managing a family member’s anger at what to them was shocking, new information about prognosis provided in the study brochure. This family was not ready to receive information about prognosis, especially without their primary team present. This is not standard palliative care. Again, I believe this study was bold and important in testing a specific information-giving intervention for a vulnerable patient population at high risk for unwanted overtreatment and suffering.  It is the study’s conclusions that are flawed, and I worry about their potential for depriving critically ill patients and their families from the benefits of true gold standard palliative care.

Elizabeth Lindenberger, MD, is a palliative care physician and program director for the Hospice and Palliative Medicine Fellowship at the Icahn School of Medicine at Mount Sinai in New York. This is her first Pallimed post.

(For more opinion on this JAMA article please see Alex Smith's post at Geripal - Ed.)

Photo Credit: @ismaelnieto

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by Christian T Sinclair

In this digital age, it is common to hear how devices isolate us from real authentic relationships. There are books written about how no one gets together once a week at the bowling alley or the coffee house, to just talk with friends and build that valuable relationship glue. I chuckle when I hear these concerns, because what I have experienced has been quite the opposite with the weekly #hpm chat on Twitter.*

(If you just saw the hashtag or the word Twitter and you immediately thought “I don’t do Twitter,” stick with me until the end!)

Next Thursday marks the 6th anniversary of #hpm chat, our weekly online chat dedicated to hospice and palliative medicine/care. In these six years, multiple friendships and connections have been made because of #hpm chat. Through these weekly conversations, I know social workers, physicians, pharmacists, chaplains, advocates and physicians I would never have likely met otherwise. They help inform my worldview of the field through sharing their experiences. One chatter recently mentioned that #hpm chat was like her interdisciplinary self-care. I must agree,. Each time I feel a little drained by work and think about skipping out on the Wednesday night chat, I sign on and find that I am re-energized by the end of the hour.

So I would like to invite you to come celebrate with us on our 6th anniversary.

For those of you who have never participated, if you have a Twitter account, please come join us. Just once and you will find a welcoming community that you’ll want to come back to. If you do not have a Twitter account, you can always follow as a voyeur by following the #hpm hashtag before you decide to get a Twitter account (I realize it is not for everyone!)

If you only have used Twitter to follow the The Hospice and Palliative Care Annual Assembly, you will find the same energy and great info all year long each Wednesday night. If it invades family time, I get that, but think of it like going out after work with colleagues. You are entitled to do that a few times a year! It’s good for your professional networking!

And if you are one of the thousands who have participated over the past six years, thank you so much for being part of a unique endeavor. Collectively we have made a tent pole for hospice and palliative care advocates to gather and support each other, all while being open to the public for education and feedback.

Since 2010 we have held 297 chats covering lots of topics, with a few repeats in there because the audience is always changing and people have new things to bring to the table. Since 2014 we have had 124 chats with nearly 88 million potential impressions from nearly 40,000 tweets from over 4,000 (non-unique) participants. We are excited to see what the future brings.

A big shout-out to the #hpm chat co-moderators: Meredith MacMartin (@GraniteDoc), Niamh van Meines (@EOLNavigator) and Ashley Deringer (@acderinger). They have done a great job making sure this chat functions week in and week out. If you are interested in helping with #hpm chat we have some projects we would like to do but need more volunteer hands on deck. Just contact any of us on Twitter or @hpmchat.


Christian T Sinclair, MD, FAAHPM is the co-founder and lead moderator of #hpm chat, editor of Pallimed, president of the AAHPM, and a palliative care doctor at the University of Kansas Medical Center.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 07/13/2016 - 9p ET/ 6p PT
Host: Dr. Christian Sinclair, and Dr. Meredith MacMartin

Follow @hpmchat and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

If you seem to always forget about the chat until it is over, you can always set a calendar reminder!

For more on past tweetchats, see our archive here.

*Occasionally people ask why #hpm and not #hpmc? #hpm was not a widely used hashtag, but #hpc was already getting lots of traffic for people to talk about Hewlett-Packard Computers (which has now morphed to High-Powered Computers). The first organizing hashtag for our field was #AAHPM for the 2009 Annual Assembly. As the Twitter tribe for our field was small back then, the decision was made by me to stick with #hpm since it was close to #AAHPM, and not staked out by any other group. We now recognize it as hospice and palliative medicine/care and have all professions well-represented at our chats.

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by Drew Rosielle

Well, I've been practicing palliative medicine for 10 years - 11 including my fellowship. So I feel like maybe I can take off my young turk hat, and put on my grumpy old man socks (I'm looking at you Bob Arnold and David Weissman) and start complaining.

What I wanted to complain about is the use of euphemistic, moralistic, and/or confusing terminology in our field, to describe our clinical work, and suggest we'd all be better off if we just said what we mean, as cleanly as possible. All of medicine has this problem, but palliative care you are my tribe, so this is what I'm going to complain about today and over the next four weeks.

During my training, I quickly got taught to avoid damaging, inaccurate, or inflammatory/scary phrases like "withdrawing care," "terminal sedation," "there's nothing more we can do," "pull the plug." So I stopped using them (although I'll note I have patients or families say the latter two to me all the time as they describe what they are deciding or what's happening). However we've got plenty of our own euphemisms in palliative care, although none as horrid as 'withdrawing care'.

This will be a 4 part-er and discuss 'comfort care,' 'compassionate extubation,' 'palliative sedation,' and 'assisted death.' I appreciate perhaps all this is a little cranky, and look forward to readers' responses, push-back, alternatives, etc. Sharpen your quill. In particular, if someone can counter-propose a non-euphemistic-but-as-nearly-parsimonious alternative, let us know. I'm not going to talk about 'serious illness,' because I don't know quite what I'd say, but I appreciate it has its problems. I don't think it's as egregiously messed as 'palliative sedation' or the others, however.

I need to acknowledge that all language is 'loaded', full of multiple meaning/connotations, historical context, etc - I get that - I'm arguing however as much as we have a choice to be clearer/more accurate/more transparent we should do so. I also appreciate that some of these terms are used as a sort of argot, an in-group short-hand ('we all know what we are talking about'), and that's fine I guess, but I still think we (in medicine, in healthcare, in life) should collectively try to err on saying-what-we-mean-clearly, as much as we can. Certainly, if we're using an argot, it should never be used in front of patients. Let the politicians have their double-talk, we're better than that.

So, grumpy socks on.

"Comfort care." "Comfort measures." Ok, I'm starting with an example that's just going to prove to you that I'm just being grumpy and vapid, because this is the one term of the 4 that I still use (in discussion with other healthcare professionals), because it is widely recognized amongst us healthcare professionals, and replacing it with the huge mouthful of 'a plan of care in a patient who is dying in which the goals of care are to prevent and alleviate suffering but not to prolong life/the dying process' is irksome, and runs the risk of the people who you're talking with deciding you're a pompous jackass.

So, yes, I say it, but only internally, I treat it as jargon, dirty, dirty jargon never to be spoken in the presence of patients/families.

My problems with it are two-fold.

One, it amplifies the already irksome and unnecessary dichotomy we have set up in medicine between 'cure' and 'comfort.' I'm no fool, I know sometimes there really is such a dichotomy, you can't have one without the other, but if remember from palliative care 101 eleven years ago, 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. This is what the whole 'upstream' 'concurrent' palliative care idea is about, right? So I don't like reinforcing that chasm. Someone on one of my teams years ago starting saying 'comfort measures only' (for all I know this language has been widespread for years, I don't remember it however prior to the late 2000s), to underline the idea that *all* our patients should be receiving comfort measures; and for most of our patients who are imminently dying, the plan adjusts such that 'comfort measures' are all they are receiving, medically. "CMO" remains a commonly used, in-house argot

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?' It's kind of like the infamous consult we've all had where it's like 'the patient wants hospice care please help arrange that' and you get there and find out the patient was asked something along the lines of 'Do you want to go home?' 'Do you want support at home to keep comfortable?' and of course the patient wants this, who the hell doesn't, but it was never actually explained to them that hospice implies discontinuing life-prolonging treatments, and not coming back to the hospital for 'aggressive measures.'  (I know, I know, not always, there is some nuance here, but this is basically what enrolling in hospice implies.)  Friends who work in hospice - these patients are enrolled all the time, right, and you go visit them and realize they have no clue what they just signed up for? They thought they were signing up for help being comfortable, and people coming to visit them at home, but not discontinuing active attempts to keep them alive.

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. 

For more Pallimed posts by Dr. Rosielle click here.


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

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A couple of years ago I wrote a Pallimed article called, "We Don't Know Death: 7 Assumptions We Make about the Dying."  Having knowledge of our assumptions is a first step, but what do we do with that knowledge?  Since I wrote that article, I have further contemplated the “so what” factor of the assumptions to develop suggested interventions.

This article is the fifth in a series of articles where I take each assumption from the original article and explore the concept in greater depth to include implications and possible interventions.  In my last article, I wrote about the assumption People don’t want to be alone when they die.

Here is our next assumption: Family matters will get resolved.

A bestselling book by Dr. Ira Byock, The Four Things That Matter Most, suggests that at the end of the day, or at the end of life, it all boils down to these simple thoughts:
“Please forgive me,”
“I forgive you,”
“Thank you,”
and “I love you.”

The book asserts that we can have powerful emotional healing within our relationships if we remember what matters. It is one of my favorite books on end of life.

As a hospice social worker, I have been witness to some powerful reconciliations at end of life: a daughter who forgave her mom for alcoholism, a son who forgave his dad for the divorce, siblings hugging it out.

We sometimes even see the patient’s physical symptoms resolve. “Terminal restlessness” may go away when that long estranged loved one finally visits. We see the unconscious patient’s brow relax. The effect of resolution in the patient is physically apparent and they die with a peaceful expression on their face.

Sadly, though, we have to acknowledge and remember that sometimes the reconciliation doesn’t happen. The daughter will never go to the nursing home to visit her dying mother. The brothers will not put aside their differences despite a shared love for their dying father. The patient will not forgive the grandson who stole from her.

Unresolved conflict can be difficult for some hospice and palliative staff to accept. We know how much better they will feel if they can just let go of past hurts. We know that if they hold grudges, they might hold it for the rest of their lives. Is there something we can do or say to help them understand?

Maybe. Maybe not. We have to remember it is not our family and we don’t have the complete picture. We should not go overboard trying to set up a reunion or reconciliation because of our own idealized view of relationships. It is easy for us to get caught up in the situation if we are repeatedly reminded by the patient or primary caregiver of the desire for contact with another family member. Remember, it takes two to reconcile.

A patient or other family member may even ask staff to make a phone call to the estranged family member on their behalf. They might hope that a staff member’s notification will be taken more seriously. They might hope we have a way with persuasion where they did not.

This intervening is not advisable. In social work, we call this triangulation. Triangulation means we are getting in the middle of things and taking sides. We have to let go of the romanticized notion of our personal role in helping to resolve a 30-year old dispute at the deathbed.

Suggested Intervention: Assist family members with talking through how to reconnect to a loved one, however, avoid interjecting yourself in the middle of the situation. You can help them with phrases on how to reconnect.

We may not be the only ones who are hoping to see a reconciliation. There are times where a family member who is close to the patient is hoping the patient will resolve issues with another family member. Sometimes it is not a matter of an interpersonal dispute, but rather the primary caregiver is disappointed that others are not visiting patient. This is especially painful for the hopeful one because the patient is dying. This is that other family member's last chance to make things right. The high expectations one family member has of another can cause frustration for all parties involved.

Suggested Intervention: Provide emotional support to family members who are distressed by non-involvement of other family members. If appropriate, encourage them to express their feelings directly to these other family members.

There may be times where we are in contact with the estranged family member. For example, when the Power of Attorney (POA) of a patient in a facility does not visit the patient. They have their reasons for not wanting to be there. If we do our part to inform the POA that the patient is dying, and they still choose not to visit, we have to accept their decision.

Suggested Intervention: Allow family to stay un-involved if they choose. Provide supportive listening if they feel they want to explain why they are estranged.

Although we may not personally have experienced extreme family dynamics such as abuse that led to estrangement, we have to acknowledge there are situations that warrant a relative’s choices. It is sometimes impossible to fully understand the contempt a family member has for the patient when what we see is a sweet, kind, and vulnerable person. We do not have all the pieces to the puzzle. We may not have any idea what was experienced in the relationship. Even if we disagree with the reason for the estrangement, we have to be mindful to be accepting of the feelings a family member has.

Suggested Intervention: Self-reflect on our own feelings about non-reconciliation.

The most memorable advice I was given as a new social worker was to remember the acronym: NATO - Not Attached To Outcome. The best support we can provide to patients and families is to provide loving kindness without attachment to how things “should” be in their lives and relationships.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW 

Note: To continue reading the assumption articles, the next one in the series is: Do Hospice Patients Reveal the Secrets to the Universe

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by Drew Rosielle

July 1, 2006 was the day I became a staff palliative care physician at the Medical College of Wisconsin, after having completed my fellowship there. So it's been 10 years I've been doing this, and I've been reflecting a little on what's changed in those years. So here are my thoughts. I don't want to pretend all of these are profound, most of them have been said by others before, and better, but things have changed in these 10 years - I've changed - and I decided to write a little about it. Much of this is just my own perceptions of things, a lot of them are my own misconceptions probably, and I don't want to pretend to be speaking for the field, or anyone else but me. I should note that my clinical work is ambulatory palliative care, and inpatient consultation, not hospice work, which undoubtedly influences some of these perspectives.

• Clearly, the burning platform in contemporary healthcare that created the need for palliative care, still exists, and probably is even more burning than before. Patients with advanced illness are all too often lost, poorly informed as to what's going on/what's realistic, overwhelmed, suffering in all dimensions; families too. When we're involved, I think we help mitigate this somewhat, but the need remains huge, and is getting huger. Yes, huger is a word. 
• Along those lines, I remember having this vague sense of professional vulnerability and territoriality 10 years ago. Worries we were going to do so well we were going to put ourselves out of business! All these other doctors would learn how to do family conferences and dose opioids-like-a-non-idiot and then we'd have nothing left to do. Good god that was so naive. I think part of it was also a growing pain worry that we weren't a real specialty, we were impostors, we don't have well-defined skills or domains that separate us from the rest of medicine. I can't remember when I stopped worrying about that. The need is so huge we'll never put ourselves out of business (the lack of a business model may, but not the lack of need), and I think I've become far more comfortable acknowledging we are specialists, we do have skills that are rare (to be collected all in one person/team) outside of palliative care programs, and we should be very proud of what we do. Most of this I think I learned from my fellows, especially the mid-career ones, who came into fellowship knowing they were good at this stuff, and they were for hospitalists and family docs and EM docs, only to realize holy christ they had a lot to learn to function as a highly effective palliative specialist in contemporary medicine. Their angst helped me see that. The people who have been yelling for years we need to train all the generalists to have better generalist palliative skills are 100% right, andI do look back on my early queasiness about this with astonishment. 
• I spend a lot of time, probably wasted, asking myself stupid questions like if I could help my colleagues do one thing differently/better, what would improve the lives of our patients the most? It's usually something like being more paternalistic. It's such a toxic word I know (I think it's probably best to replace 'bad paternalism' with 'authoritarianism' which I think is a better description of what we were getting away from in medicine in the late 20th Century), but the longer I've done this the more I've become convinced that it would greatly improve the lives of our patients and reduce suffering if we were more paternalistic. Probably a better way of stating it would be if we gave patients much more guidance and direction as they approach the end of life. Sometimes when I'm teaching residents about code status discussions and early on talk about if they think a DNR order is indicated they need to, are obliged to, actually tell the patient that, I am amazed at the pushback sometimes "you can't say that." It's entirely fucked up, if you don't mind me saying so. Despite the so-called primacy of autonomy in contemporary medicine, us doctors and clinicians walk around all the time telling patients what we think they should do, what we think the right thing is (it's time to start medication for your blood pressure, you need a colonoscopy, your mother needs to be admitted to the hospital, we need to start dialysis soon). Most of us have figured out a way of doing that without being authoritarian, I'm not talking about not discussing the options, the pros/cons, but we still blithely and routinely and without thinking twice tell our patients 'you need a colonoscopy,' 'I think you should be admitted to the hospital,' etc. I'm convinced the world would be a better place if more people had the same approach to discussing end of life care, code status, etc with patients. It's this weird thing where we start treating end of life or code status (in dying patients) decisions as some sort of human right, where people have unlimited autonomy to decide whatever, instead of a collaborative, therapeutic decision in which our knowledge of the medical aspects of it (what's realistic etc) are key.
• You kinda get good at doing your work, and it's really easy to forget how tough it is for some of our colleagues in medicine and nursing. The patient is crying, the family are upset, they want things medicine cannot achieve for them, a young person is dying, a child is losing a parent, a family can't make a decision. You can be very, professionally aware of all that, in touch with it, thinking closely about how to help these suffering people, working closely with your great interdisciplinary team to figure out how best to help them, and it's just kinda doing your day to day job to do that, and forget that that sort of work is very foreign, very challenging, very outside of the 'safety zone' of some of your colleagues outside of palliative care. Not all of them, of course, but I still find myself surprised as I'm talking with a colleague and I realize 'OMG they are really being irrational about this situation' and realizing this space we are very professionally comfortable in is not a space they are comfortable in.
• Upstreaming, mainstreaming, making palliative care concurrent, really is happening. In fits and spurts, piecemeal, but I am seeing so many more patients way upstream today than I was 10 years ago; and I'm seeing so many more 'survivors.' People who nearly died but the allogeneic stem-cell transplant worked, or 10+ year survivors of widely metastatic breast cancer. In this context I have had to learn opioid weaning and tapering - honestly this was a skill that I don't remember learning in my fellowship because it was just so rare. Now I do it all the time.
• My relationship with opioids has changed, a lot. It would be too much to say I bloody hate the things - I don't, they are the best we've got for many patients much of the time, and I do spend more of my time coaching and supporting patients to actually take the opioids and work through the problems with them, but I've become more and more impatient over the years for something better. So many side effects, so many patients for whom they end up being maladaptive and harmful. Not so much patients nearing the end of life, or patients with painful conditions caused by ongoing clear tissue damage (eg cancer), but we see so many patients now who aren't quite in that category, and for whom the approach with opioids I learned early in my career (which continues to be very effective for my patients near the EOL, and for many of them with significant tissue damage pain syndromes [I refuse to say cancer pain because I think the carving out of cancer pain as something therapeutically or morally special is just bullshit]) is maladaptive, harmful. I've harmed people - it took me some years and some mentoring to figure this out, and to develop a different skill set to try to help these patients, and it's not easy but that's also been fun (learning new things). 
• It's weird, but it was several years into my career before I realized how important it was to give my patients encouragement "you can do this", I don't remember if I just missed opportunities for it earlier, or if the preponderance of my patients were so terminal that it never came up and now that our patient population has shifted I do it all the time.
• Methadone really is a helpful drug. I did not really appreciate that 10 years ago.
• We need more and better research, clinical research. I'm not an investigator, I know it's easy to complain, but I've become really demoralized with the lack of good clinical research. Like, for instance, what the actual risk of QT prolongation is with methadone, etc - so many people are super queasy about it but the actual risk hasn't even been defined, and expert-panel consensus pronoucements don't count.
• Advance directives and advance care planning, especially in patients who aren't living with serious illness, should be considered a novel intervention that should be investigated, but not some sort of foregone conclusion as being helpful. The research showing that it is helpful is just not there, it is very limited, and actual trials of advance care planning have been few and have struggled to show actual improvement in patient-relevant outcomes. I want to be clear that I very very much believe that talking with patients with serious illness about their future, options, choices/decisions/scenarios they may be faced with, preparing them and their families for that - that I believe is a very good thing. A profoundly good thing which would transform medicine if we did it better. However, health systems spending millions of dollars on getting people to complete forms should be considered an unproven, investigational intervention. When I talk about this, and it's an uncomfortable thing to talk about in palliative circles, I'll often ask palliative care people - How often are you just like "Oh yeah, I am so grateful that patient had a health care directive! It really helped their situation!"? The answers range from 'rarely' to 'never.' I have appreciated Rebecca Sudore's and Tara Fried (and colleagues') discussion of this over the years, and research, on how we need to think about ACP completely differently (and, I'd continue to add, consider it a novel intervention which needs investigation, prior to widespread use/investment). I also think we probably need to reconsider the goal of advance care planning as we research it, and move away from the goal being somehow examining congruence between what people say they want on paper and then what happens (too much research has focused on this), and instead reconceptualizing it as an essentially palliative intervention to reduce suffering (emotional, but also perhaps physical) for patient and family. I do think that line of research has promise, but getting people to decide things in advance, not so much.
• I'm not sure palliative care is going to save American medicine, but I do think the model of how palliative and hospice teams do care (which is not a model we invented or own I need to acknowledge - geriatrics teams, long-term care teams, rehab teams, some primary care programs, & many others do this and were doing this before us) is one of the only ways to make contemporary medicine a humane place to work. I'm talking specifically about doctors and medical practitioners here I guess. I don't pretend to 'know the solution' for what ails medicine in 2016, but the current environment we have now in which docs are still mostly measured on volume, and how well we composed a nearly-worthless-trash-filled-but-highly-billable Epic note is a catastrophe. Pure shit. Creating interprofessional, high-functioning health care teams which are measured on patient-relevant outcomes and not volume and how complete your fucking notes are, in which the physician's role is to be a medical/medicine-leader, support other clinicians' medical work, and doing high-impact but lower-volume complex clinical patient care has got to be the way forward.
• Even more now than 10 years ago, I am just so goddamn grateful that I get to do what I do. Not some of the crummy paperwork/admin stuff, but being able to care for patients as part of a palliative care team, to practice medicine in this way...I feel so lucky. It's good work, and I'm glad I stumbled into it a decade ago, and I'm so grateful to the people who taught me during my fellowship (I still quote you to this day Lisa Marr, David Weissman, Linda Blust, Jo Weis, Sandy Muchka, Joan Golden, Ruth Drazewski, and many more), and those who have taught me in the subsequent years to. It's a good gig, stamping out suffering.

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by Karen J. Wernli

In the summer of 2014, my sister-in-law, a new mother, died of cancer after 11 years with her disease. Although doctors gave her the best care they could, as a health researcher focused in cancer care, I wanted to do better for people like Clare. Then, at a scientific conference that fall, I learned that others had the same desire. Representatives from the National Cancer Institute were asking for studies to improve care for adolescents and young adults, including at the end of life. On the plane home, I started working with my research ideas. I realized that to know what young people with advanced-stage cancer need, want, and value, we need to ask them directly. That’s what the Clare Project is doing.

I was fortunate to get support from the Group Health Research Institute Development Fund for pilot work. My team and I started by interviewing a few young adults with end-stage cancer. I learned so much from them about their concerns and values. Now, my Clare Project team of Drs. Marlaine Gray and Evette Ludman and Tara Beatty and I are taking a new approach for the next phases of our work.

A personal approach for a personal project

Clinical studies usually recruit people through the health system, with waiting-room posters or physician referrals. Because our work asks intimate questions about end-of-life priorities, we wanted something more personal. Clare used social networking to keep in touch with friends and family, so we started a Facebook page and a blog to tell our story. These have been wonderful for connecting with people who support our research. But we’ve found an even better way to engage with patients.

Based on many helpful suggestions, we started looking into online communities for young people with cancer. Through social media like Twitter, patients and caregivers are meeting virtually for empathy, encouragement, and practical advice. These communities make patients feel less alone. They are places to learn and share about real issues such as how to handle treatment side effects. The people in these groups aren’t tech geniuses or first adopters. Many joined Twitter only when their health status spurred them to find others with the same illness. Connecting with people through these forums takes time and in the end, is highly efficient.

Marlaine, especially, has spent hours reading blogs, listening to podcasts, and following Facebook and Twitter feeds to learn the culture of online communities for young adults with cancer. This activity alone has been invaluable for our research by showing us the diversity of experiences, issues, and challenges that people are talking about. We’re still learning about blogging, posting, and tweeting, and we’re grateful to everyone who has allowed us into their conversations. By trying to be respectful members of these communities, we’ve been able to reach out directly, one-on-one, to potential study participants, to ask if we might talk with them. Everyone we’ve asked has said yes.

The future of patient-centered research

Our work is going in many new directions. We just received National Cancer Institute funding to understand nationwide trends in end-of-life care for adolescents and young adults. In the next phase of the Clare Project, we’re going to ask caregivers and health care professionals what questions people have about care and treatment and how our research can answer them.Please contact me and see @clareproject if you want to know more. My family is proud that Clare, who was a high school biology teacher, has a legacy in research.

I’m committed to having patients, caregivers, and health care providers help me formulate, conduct, and spread the word about my research. I’m convinced about using social media to do this. As an epidemiologist, I’ve changed the way I think about a study population. It can still be people connected geographically or by a health care system. But it can also be virtual: people meeting online to discuss their disease, how it is treated, and what they think about their treatment.

I’ve experienced how patients are willing to directly and honestly communicate their ideas to researchers using social media and how they are rewarded by participating. I think we should all realize that in the 21st century, this is the best way to connect with people affected by our work. Patients, caregivers, and providers are online, talking about the issues we’re studying. Shouldn’t we be listening?

Join us Wednesday, 9 eastern/6 central for #hpm chat to discuss palliative needs withing the Metastatic and Advanced Young Adult Cancer Community (#mayacc), We'll discuss effects on patients and caregivers, and how The Clare Project hopes to bring better understanding to the needs of those patients and caregivers.

Karen J. Wernli, PhD, is a Group Health Research Institute assistant investigator working with The Clare Project.

Originally posted at the Research Health Group Blog

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The editors of Pallimed are proud to announce a new editorial feature: Pallimed Roundup. In these articles we will publish a collection of quotes culled from palliative care professionals around the world.

Our first question was: What advice would you give to graduating palliative fellows?

“Let the patient's and family's goals be your guide. You will be, and should be involved in discussions of discharge planning, financial and insurance issues, hospice and mortality statistics, but your true north should remain the goals of your patient and family.”

-Ross Albert, MD PhD

“Keep loving your patients till the end; they deserve it and you deserve it.”

- Rafael Bloise, MD

“Keep a clinical palliative care practice. Do not let research, administration or business interests destroy your clinical skills and the ethical foundation of all your career, patients and families.”

- Eduardo Bruera, MD

“In palliative medicine we become experts one patient and family at a time; keep learning, keep your heart open, and remember to breathe.”

- Ira Byock, MD, FAAHPM

“Listen to your patients, they have the answers!”

- Jim Cleary, MD quoting Dame Cicely Saunders

“Get yourself, your ideas, and the view that others have of you out of the way. Discover your true voice and use it.”

 - Michael Fratkin, MD

"Be Kind."

- Sonia Fullerton, MD

"Remember to pause and ask yourself 'what is your intention?' before seeing each and every patient."

 - Robert Gerard, MD

“Remember the doctors of old, the ones without antibiotics, morphine, and all the other modern medicaments and machines—the ones that sat bedside, held hands, and listened—for they were the true doctors, the ones who were present and shared the anguish of suffering, the ones who understood the burden of fear was too heavy to carry alone; model them, and you’ll be fine.”

- Paul Rousseau, MD

“Make time for talking with mentors and professional development activities that peak your curiosity, they are gifts you give yourself.”

- Holly Yang, MD

“Keep in close touch with your colleagues for discussing cases, sharing new ideas and information, not practicing in a vacuum, and even getting some emotional support when things are rough. It is more important than ever since we can be so isolated at times. [Use] the AAHPM Forum, blogs, emails, phone consults, HPM meetings, and set up one-day meetings with other medical directors/HPM doctors in your area."

- Don Zacharias, MD

Interested in participating in the next Pallimed Roundup? Have ideas for a question? Please contact Lizzy Miles.

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by Christian Sinclair

Eleven years ago today Drew Rosielle posted his first post to pallimed.blogspot.com* about Hospice and Palliative Medicine becoming slated to be officially recognized as a specialty by ABIM and ABFM! We had a great year commemorating our 10th year anniversary. We posted 123 new posts to pallimed.org, a new 4-year high (that we are planning on breaking this year!) The Pallimed Facebook page flew past 10,000 likes, #hpm chat is still going strong, and we are starting to explore other social media platforms like Instagram.

We still have a lot of work to do ahead this year, like:

• further establishing the Pallimed Foundation which will allow us to make Pallimed sustainable and consistent going into the future
• finding a few new assistant editors willing to help writers get their work published
• discovering a new class of Hospice and Palliative Medicine Fellows who are interested in digital communications in health care
• getting back to our roots featuring more journal article reviews
• streamlining content curation and distribution across all the Pallimed branded channels - all 11 of them!
• partnering with other key blogs and digital media through the Pallimed Network to highlight the best writing on hospice and palliative care

We are always on the lookout for enthusiastic and self-starting volunteers, because many hands make light work. If you are interested in being part of Pallimed and have a few hours to invest in the future of hospice and palliative care, then please take a look at our Pallimed Opportunities page.

So now on to the fun! The internet has given us many great new ways to highlight the things we love. One of the more popular memes has been #(Blank)inSixWords. Some variants change the number, but the essence is you have to distill the meaning of something into a small amount of words. The idea originally spang from the Six-Word Memoir, some believe to be made famous by Ernest Hemingway who wrote: Baby Shoes for sale. Never worn. That would surely be Grief and Bereavement in six words.

A few months ago, Dr. Mark Reid (@MedicalAxioms) started the hashtag #SpecialtiesInSixWords on Twitter and palliative care featured prominently. Here are a few of the contributions:

• Palliative Care: We can stop hurting you now. - Mark Reid @Meidcalaxioms
• palliative care: getting it right near the end - Alex Puxty @apuxty
• Palliative Care: Help you live 'til you die - HCSM News @HCSMNews
• Palliative Care: Pain Relief, Symptom Management, Patient Dignity. - Phillip Anthony @nurse_panthony
• Palliative Care - "I'm so sorry. Cup of tea?" - @Emmcm1982
• Palliative Care: I want to see my horse. - @DrJohnAquino
• Palliative Medicine: All medicine's palliative; we're just honest - @AlexBThomson

So to celebrate 11 years of Pallimed, we invite you to share your own Hospice and Palliative Care in Six Words on your social media platform of choice. You can choose Hospice alone, Palliative Care alone or include both, so make sure your six-words begin with what you are describing. Later this year we will feature the different professionals or aspects in six-word stories so

On Facebook: Share them in the comments section of this post
On Twitter: Include #PallimedTurns11 and @pallimed
On Instagram: Include #PallimedTurns11 and @pallimedblog
On Tumblr: Include #PallimedTurns11 as a tag for your post

We will be highlighting some of the best through the year, and will make a few into images to spread around the internet (for which we will ask for permission). Feel free to make an image with free tools like Canva.

We look forward to what you can think of! Thanks for sticking with us for 11 years!

Christian Sinclair, MD is the editor of Pallimed, president of the American Academy of Hospice and Palliative Medicine and a palliative care doc at the University of Kansas.

*That used to be our official address!

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by Lauren Drew

Front line caregiving is an all-consuming job. Even if you are technically “off the clock,” you are still carrying the emotional exhaustion of your day. You may work twelve hour shifts, and return home to care for your own family. Finding time for self-care is nearly impossible. I fully understand why most hospice and palliative care providers tell me that they just “don’t have the capacity” for advocacy. To them, advocacy is something that requires tons of time, or maybe a PhD in Political Science, or a close friendship with a Member of Congress. It requires none of these things, but at the end of a busy day, it is the last thing on your mind. I get that. But I am here to tell you that your role in the advocacy process is essential, unique, and impactful.

Your role in advocacy is essential. Due to the nature of the care you provide, there are very few patients who are able to advocate for themselves. Families working through the grieving process are still addressing their personal loss, and may not have the necessary understanding of the larger picture of care provision. It does fall to the already exhausted practitioners to tell their stories.

“But isn’t that what you do?” Yes, at the National Hospice and Palliative Care Organization (NHPCO) and the Hospice Action Network (HAN) we do a ton of advocacy on behalf of providers, patients, and families. We work with Congress, CMS, the VA and other organizations to help preserve, protect, and expand the Medicare Hospice Benefit, and promote expanded availability of palliative care. We educate legislators, policy makers, and regulators on the issues affecting hospice and palliative care, and advise them on changes that would improve both patient and provider experience. But we are not caregivers. We are not medical professionals with hands-on patient interaction. And unless you tell us what you are experiencing, we may not know how to help.

Your role in advocacy is unique. No one knows about the provision of hospice and palliative care like those who do it every day. No one understands the benefits of psycho-social care, music and art therapy, family grief counselling, and spiritual care like those who see how it improves their patients’ experiences. No one knows about the perils of NOE/NOTR data entry errors, or ICD-10 billing fiascos, or Service Intensity Add-on Payments like real hospice and palliative caregivers. We can tell Congress all day long about the numbers and the census and the quality reporting measures. But only you can talk about what it is like to attend “a good death.”

Your role in advocacy is impactful. Believe it or not, Congress lives and dies by their constituents. The Congressional Management Foundation conducts surveys of congressional offices, and how they make decisions on issues. If the Member of Congress has not already made a firm decision on an issue, staffers say that over 90% of the time, an in-person visit by a constituent is the most impactful advocacy strategy. Not lobbyist dinners or campaign contributions, but in-person meetings with the constituent themselves has the biggest impact. Additionally, over 98% of staff said that “attending events in the district” is the best method of understanding their constituents’ needs. If your program has an annual 5K, Family Barbecue, or Veterans Day Event, invite your Member of Congress!

Now, what NHPCO and HAN can do is make the advocacy process easier. Hopefully after reading this, you understand how important your role is in the advocacy process, and want to do your part. HAN streamlines this process for you by providing the resources you need to find your Member of Congress, educate yourself on the issues, and connect with your Member in efficient yet impactful ways. Here are some easy first steps:

• Find your Members of Congress with our Find Your Legislator tool 
• Follow them on Facebook and Twitter (Need to learn more about Twitter? We have a short video!)
• Sign up for our Legislative Action Center—we promise we only email you when it is important!
• Take Action on our Action Alerts—again, we only do Action Alerts for the most important things

If you want to get more involved, you can check out our Advocacy Toolkit for tips on requesting meetings with your Member of Congress, inviting them to events, and building long-term relationships.

Hospice Action Network will also be hosting the June 8 #HPM Tweetchat, talking about just these issues! Come by and learn a little more about advocacy, policy, and ask your questions! We will be soliciting specific stories relevant to the Care Planning Act and Rural Access to Hospice Act at the end of the hour, so please review the briefs and come prepared to share your experiences!

Topics for the evening include:

T1: What do you think Legislators need to know about hospice and palliative care that they don’t? Who else besides your elected officials need education?

T2: How can we close these gaps and better educate Legislators (and others) on these issues?

T3: What resources do #hpm providers need to be better advocates? How can we encourage more providers to participate?

T3.5: Is there anything that prevents you from advocating? Any barriers that need removal or misconceptions that need clarification?

T4: Specifically now, having read our briefs on the Care Planning Act and the Rural Access to Hospice Act, how can we help advocate on behalf of these bills? Please share any personal experiences with advance care planning, concurrent care, or rural care that would be relevant to these bills!

I hope you will join us on Wednesday, June 8 at 9pm EDT!

Lauren Drew is a Program Associate for Grassroots Advocacy at the Hospice Action Network. You can follow her on Twitter at @GrassrootsDrew.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 6/8/2015 - 9p ET/ 6p PT
Host: Lauren Drew follow @GrassrootsDrew and Hospice Action Network follow @HospiceAtion

Follow @hpmchat and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.

This post was co-posted at the Hospice Action Network blog.

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by Stacey Tinianov

Transformative change takes time and effort yet these epic journeys always begin with single steps.

With bite-sized change in mind, how might we encourage little shifts in the way we communicate and practice to catalyze big change in re-imagining the end-of-life experience?

Redesigning Communication

If we would like to re-imagine the end-of-life experience, might we begin to reconsider our terminology as it relates to death?

“She lost her battle with cancer.”

Winners and loser conversations may be better suited for discussions around play-off games. When someone dies from their illness, claiming the disease as a victor does everyone involved a disservice. Might we reconsider these words?

“Do Not Resuscitate”

A DNR is a vital piece of information for patients being treated in a healthcare setting. And while the point is obvious, a verbiage change might be in order. As part of the 5/23 #Hcldr tweetchat, Dennis Kenez tweeted a simple idea: Instead of a DNR, might we consider an AND (Allow Natural Death).

T4 AND = Allow Natural Death instead of DNR Do Not Resucitate might help many understand #hcldr

— Dennis Kenez (@denniskenez) May 25, 2016

When I read the tweet, I thought, “What a brilliant idea!” And when I explored the idea, I realized that this particular suggestion is not a new idea but has perhaps just been caught of the vortex of “Change is Hard.”

On December 1, 2014, Dr. Brett Belchetz covered the topic of moving to an Allow Natural Death order in his National Post article, “Do away with the term 'do not resuscitate'”

“In order to deal with the fact that most elderly and severely ill patients opt out of receiving CPR once the risks are explained to them, but are leery about signing DNR forms, we need to change our vocabulary. Instead of asking patients who say no to CPR to sign a form telling us not to care for them, physicians should be asking them to affirm their preference for a natural, dignified passing. Simply put, I believe the term DNR needs to go away, to be replaced with the term AND – Allow Natural Death.”

In our healthcare system of communication by code, another opportunity was articulated in the April 10, 2014, NYT article “A ‘Code Death’ for Dying Patients” by Dr. Jessica Zitter. Rather than a Code Blue, Dr. Zitter advocates for a Code Death and the surrounding process and protocol that advocates a more peaceful, natural process of dying. She moves through the phases of communicating the realities to the patient families and then into the technical aspects of removing interventions while keeping the patient comfortable. And, in her words, “Because helping patients die takes as much technique and expertise as saving lives.”

Redesigning Practice

Using the right words is critical yet still leaves plenty of room for a change in practice around how we handle end-of-life. The concept of a “Comfort Cart” in lieu of a crash cart by introduced in the August 28, 2013 article “Exchanging a Blanket for a Code Blue” by Richard Gunderman and Peg Nelson.

“The very day the decision was made not to call for the crash cart if Mr. Stephens’ heart stopped, a different kind of cart was called for.

This was a new kind of cart that is being implemented at a number of hospitals across the country: the comfort cart. Unlike the crash cart, it does not contain a cardiac defibrillator, endotracheal tubes, or powerful medications such as epinephrine and dopamine. Instead it contains much lower-tech but nonetheless powerful items, including music, scriptures in various faith traditions, and a variety of homemade “love” blankets. For the patient’s family, it also includes information on grief, the dying process, and lists of area support groups, funeral homes, and community assistance programs for burial. Finally, it contains a plaster kit for making a cast of the dying patient’s hand.”

OpenIDEO, in conjunction with sponsors Sutter Health, Ungerleider Palliative Care Education Fund and Helix Centre, has kicked off a new challenge:

Each year around 55 million people worldwide and over 2.5 million in the United States face the end-of-life. In the U.S., the end-of-life experience has shifted dramatically since the 1950s, as death has moved away from the home into institutions like hospitals and nursing homes. By the 1980s, less than 17% of people died at home. We believe the people and unmet needs behind these numbers inspire a huge opportunity for design. ~ OpenIDEO Challenge

While each of you is invited and encouraged to visit the Challenge website to include your creative ideas, we’ve also taken to the Twittersphere to generate conversation and input to this challenge. Please join us on June 1st at 6pmPT/9pmET to participate in the conversation and help us reimagine the end-of-life experience.

T1: How might we better prepare individuals & families for open discussions around #EoL care?
T2: When and how should #EoL conversations begin? Who should be involved?
T3: What verbiage surrounding the #EoL experience may be in need of an overhaul?
T4: What practices surrounding the #EoL experience may be in need of an overhaul?
T5: What other ideas do you have on how we might we re-imagine the #EoL experience?

Stacey Tinianov, @coffeemommy is a community engagement consultant and on the Advisory Panel for the OpenIDEO Challenge “Re-Imagine the End-of-Life Experience.”

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 6/1/2016 - 9p ET/ 6p PT

Follow @hpmchat and go to www.hpmchat.org for up to date info.

If you are new to Tweetchats, you do not need a Twitter account to follow along. Try using the search function on Twitter. If you do have a Twitter account, we recommend using tchat.io for ease of following. You can also check out the new site dedicated to #hpm chat - www.hpmchat.org

For more on past tweetchats, see our archive here.