Thursday, June 30, 2016

Looking Back on 10 Years of Palliative Medicine

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.
Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. 

Thursday, June 30, 2016 by Drew Rosielle MD ·

Wednesday, June 29, 2016

The Clare Project and "What Matters Most?" to young people with advanced cancer

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

Wednesday, June 29, 2016 by Christian Sinclair ·

Monday, June 20, 2016

Pallimed Roundup: Advice to Graduating Palliative Fellows

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.

Monday, June 20, 2016 by Lizzy Miles ·

Wednesday, June 8, 2016

Hospice and Palliative Care in Six Words - Celebrating Pallimed's 11th Anniversary

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!

Wednesday, June 8, 2016 by Christian Sinclair ·

Tuesday, June 7, 2016

How to be an Advocate for Hospice and Palliative Care

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:


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  and Hospice Action Network 

 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.

Tuesday, June 7, 2016 by Pallimed Editor ·

Wednesday, June 1, 2016

Communication & Practice: Re-Imagining the End-Of-Life Experience

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).

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

 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.

Wednesday, June 1, 2016 by Christian Sinclair ·

Tuesday, May 10, 2016

Tell Me a Real Story

by Staci Mandrola

Charlotte is three and a half years old. She loves stories. I tell real stories. John tells made up stories. The first words we hear when Charlotte walks in the house are “Tell me a story, PaPa!”

Stories put me on a path more than 40 years ago. The path to being a doctor and then a hospice and palliative medicine doctor. I listened to my grandmother tell stories about her physician father leaving the house to check on a woman in labor or a dying patient. He might not return for days. His payment ranged from a chicken to a milk cow to a beat up John Deere.

I listened to my dermatologist father tell the story of a woman who wiped herself with poison ivy leaves after peeing in the woods. He told my three siblings and me that it’s always best to drip dry when camping if you can’t verify the exact nature of your toilet tissue.

I listened to my teachers in medical school, physicians with years of experience, tell patients’ stories to ensure we would not repeat their mistakes. One of my favorite came from an internist who taught me during my second year. A patient nearly bled to death from an AVM in his bowel which had almost certainly been bleeding for days. The internist asked the patient why he didn’t seek help when he saw the blood in his stool. The patient replied that he never looked at his stool, that was disgusting. I can still see the internist shaking his head, admonishing us to never flush before we inspected our own stool.

I am reading Internal Medicine: A Doctor’s Stories by Terrence Holt, MD. It is an evocative book about medicine residency that had my long-dead intern-year butterflies swirling by the second page. In his introduction, he details how difficult it is to tell a patient’s story without identifying that person. It’s “not enough to respect the patient. As long as there’s an actual, unique individual beneath that disguise, you’re making a spectacle of somebody’s suffering, and that’s a line no one should cross. It’s bad for the patient. It’s not good for you the writer, either.”

I would argue that it is essential to continue our story telling in medicine. And that they are real stories about real people because that’s who we treat. We don’t treat made up people with made up diseases. We get KUBs to diagnose constipation because many don’t examine a belly anymore. We may be one step away from putting made up stories in the chart because that’s the only kind of story we tell students.

The cautionary tale I emphasize in my opioid management talk illustrates why you shouldn’t use methadone unless you’ve had special training in how to do so safely. He was a 60-year-old with head and neck cancer, he had weeks to months to live and he had neuropathic pain refractory to other opioids and adjuvants. I started a rapid rotation in the hospice inpatient unit. I stayed just inside the published guidelines for methadone titration in severe pain. He stopped breathing at 3AM and required a naloxone drip and transfer to the MICU for 24 hours. He did well on a lower dose of methadone and lived for 6 more months with good pain control. I tell the residents that methadone will bite you in the ass. It hasn’t bitten me since but I learned from his story and I pass it on. I don’t say his name but it’s him. He is imprinted on me.

I tell my own story about when I fell off my mountain bike and broke my hip in two pieces. I took 5mg of hydrocodone each of the three night until I had my total hip replacement. That was enough. Then 12 hours after surgery, when the bupivacaine liposomes wore off at home, I was trapped in a red bubble of pain and misery. I took that same 5mg of hydrocodone times four tablets, a meloxicam and an aspirin. It’s no wonder people take too much Tylenol and get into trouble with their pain control.

I have cared for people with issues that are hard for others to look at. One family struggled with their loved one’s cancer that was visible from the outside. A sister cried every time she saw it. A brother became physically ill. They asked me if this was the most awful thing I had ever seen (their words)? I told them there is nothing the human body can do that is too awful for me to look at, to touch or to comfort. I told them the stories of three other people who had cancers that were visible and the ways that they, their families and caregivers were able to cope. They expressed their fears, found common ground in the stories of others and moved forward with the care of their loved one.

Stories are what sustain and inform our profession; they inspire, they instruct, they give comfort. They should be real stories. I ask every patient and family if I may share their story. None have yet told me I may not. Stories brought me to medicine and keep me in medicine. Real stories.

Dr. Staci Mandrola is a wife, mom, grandma and palliative care doc working as part of a super awesome team at the Robley Rex VAMC.

Image credit: "A Story Book comes to life" by ClaraDon via Creative Commons BY-NC-ND

(Ed note: Link to Internal Medicine: A Doctor's Stories by Terrence Holt MD is an Amazon Affiliate Link to help support Pallimed's not-for-profit and volunteer efforts.)

Tuesday, May 10, 2016 by Christian Sinclair ·

Monday, May 9, 2016

Beyond the Primary Caregiver: Supporting the Other People in a Palliative Patient’s Circle

A conversation between two specialists
by Allie Shukraft and Lizzy Miles

At both ends of the generational pendulum lie two groups that may seem to be daunting to some: children and the senior population.  These are specialty populations because there are unique considerations with aspects of their medical care, especially within the framework of palliative and hospice care.

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss some of the differences and similarities between these two seemingly divergent specialty populations. Allie and Lizzy also describe their social worker roles as they relate to their patient groups.

This article addresses systems theory and how we can provide support for additional people in the palliative patient’s life, beyond the primary caregiver. This is the fifth article in a series of joint conversations about the similarities and differences with pediatric and geriatric specialty populations. (Read the other posts: Developmental Life Cycles, Social Work Research, End-of-Life Decisions, Getting Started).

In many articles about hospice and palliative care, there is an additional emphasis placed on supporting the caregiver in addition to the patient.  In our work with patients, we are often asked to identify the “primary” caregiver so as to have a point person for our communication. We know, though, that there are often many more people in a patient’s life that are affected by their terminal disease. Often we have face to face encounters with these additional loved ones. This article intends to identify the types of additional people we often see in pediatric and geriatric settings, and provide suggested interventions on how we might be able to practically provide support.

First and foremost though, let’s talk about the primary care provider in each respective specialty.

Allie: In the pediatric world, many of the conversations and even interventions are aimed at the parents who tend to be the primary caregivers for palliative care patients. Whether this is one person or more depends on many factors: are the biological parents married or even together in a romantic relationship? If they are not together, are they amicable and choosing to co-parent? Are both birth parents alive and are they both of age to consent (this varies by state)? Are there additional significant others in their lives, such as other spouses who are now step-parents? Is the patient adopted or in DSS custody? Are the primary caregivers foster parents, extended family members providing care for one of a number of reasons, or is the primary caregiver some other person who has informally assumed a role in this child’s life? Although it can be uncomfortable to ask these kinds of questions (for example, I have learned by trial and error to ask vague questions such as “how are you connected to this child?” rather than assuming questions such as “are you Grandma?”).

It is important for several reasons to assess these relationships. The medical team needs to know who is caring for the child, that the adults in the room are capable of and legally entitled to make decisions for the child (and receive medical information from the team), and that the child will be safe and well cared for upon discharge. We now live in a world where, increasingly, family is defined by the systems in which the children operate, rather than by biology.

Another thing to consider in the pediatric world is the patient’s age. Although our typical patient is 18 years of age or younger, we sometimes are able to extend our services to older patients because of their diagnoses or the duration of their treatments. For example, many pediatric oncology or cardiology programs will follow patients with pediatric diagnoses well into their twenties. For these patients, their own significant others often take over as primary caregivers, sometimes in conjunction with the patient’s parents, sometimes on their own. This can put a huge strain on a young relationship which, as many of us may remember from our early twenties, likely faces many challenges already.

Lizzy: To begin with, the age range for someone who is considered a geriatric patient is expansive – covering more than forty years, if you define geriatric as over the age of 65.

The nature of the relationship of primary caregivers we see with the geriatric population are widely varied. The primary caregivers who are family members might include: spouse, sibling, sibling-in-law, child, child in-law, niece, grandchild, great niece, great grandchild, ex-spouse, ex daughter-in-law.

Other than family members, primary caregivers can include: friends, lawyers, professional care managers, and guardians.

One might assume that younger patients are more likely to have a caregiver that is a spouse, but I have had many patients in their nineties whose primary caregiver was a spouse who was also in their nineties. You can also have a geriatric patient whose caregiver is their parent. It is less common.

Let’s now identify the peripheral people that we come into contact with in our day to day care of the patient.  

Allie: In the pediatric world, this typically encompasses grandparents and siblings, with extended family, church community members, and members of other systems in which the patient participates (which may include school staff and classmates, teammates, scout troop members, and various other communities). Although these people likely care about the patient a great deal, many of them have never gone through a child’s serious illness before so they often benefit from guidance of some kind. The type of guidance varies, but often having a specialist such as a Child Life Specialist or a Chaplain or Social Worker speak to these people about what is helpful and what feelings are normal can be beneficial.

Although the patient and the identified immediate family are likely the ones hit hardest by the illness, others will feel it too, and they may be unaware of how their experience differs from that of the immediate family or what they can do or say to be helpful. To be fair, when faced with someone else’s pain, it can be difficult for anyone to “just be there” as we often want to provide comfort or “fix things” in some way. Phrases that are intended to be helpful in this way (such as “well at least . . .”, “stay positive”, or “everything’s going to be fine”) can actually serve to minimize the patient’s experiences and can damage trust and even end relationships.

Lizzy: For elders, it may depend on how social the elder was and how many organizations or communities the elder knew. Obviously, there can be other family members besides your main contact. These other family members may be all the ones that are listed in the primary caregiver section above. In addition to family it’s powerful to see how many other people can show up to visit the patient. When there is a revolving door of visitors, you know this patient is going to be highly missed.

If a patient lives in a long term care community, there are two main groups of visitors beyond family and friends: other residents and facility staff members.

If a patient lives at home, the additional people you might come into contact with are: fellow congregates from their church, former co-workers, friends and neighbors.

Supporting the network: Start with gathering information

Lizzy: The first thing to do is to have a conversation with the patient and with the primary caregiver about who is the most important of their family and friends.  Sometimes you learn that simply by who is present during the admission.  I have admitted patients to hospice with an audience of 10 people in the house. Everyone wanted to hear the information that was being provided.

Many hospice admission packets ask about information disclosure. When you are covering this information and they get fatigued by trying to list everyone they can think of, including in-laws, you will get an idea that they have a large, open system.

Suggested Intervention: Ask the patient, “Who is most important to you?”

Supporting the network: Traffic control

Allie: One of the things that any pediatric nurse worth his or her salt will do is take on the role of the “bad guy” and limit visitors, whether this is because of hospital policy or patient or parent wishes. One thing that many people don’t realize is how much energy being sick or taking care of a sick person can use up. Whether you are active all day or just spent most of the day sitting there, watching your baby who is too sick to hold, all of the conversations you have had with staff and family, as well as all of the worrying and the stress of life with illness can take a toll. As professional caregivers, it can be helpful for us to suggest limiting the number of people in the room with the patient, keeping visits short, or even turning people away who are not needed or when someone in the room is sleeping. Depending on the circumstances, this can mean staff as well as visitors and even close family and friends. Sometimes a patient or parent need our permission to do this; at other times, they need us to step in and limit visitors or turn people away. I have had parents tell me that they would not turn people away because it would feel rude but then beg us to keep everyone out. It is also important that we do not ask the caregiver or patient in front of the visitor if they are allowed in. This places the power back on the patient or family, rather than the staff member.

Lizzy: It is not our responsibility to decide who should visit and when. Our role is to support the patient and family to ensure the visits are helpful and wanted. We need to encourage the patient and caregiver to set boundaries if they are tired or do not feel up for visits. They might be exhausted and not know how to defer visits to another time. We can offer suggestions for how the caregiver might manage the visitor schedule. Understand that it is not uncommon for caregivers to choose not to send people away even though they are tired…and that is okay as well.

Suggested intervention: Provide suggestions to caregivers for what to say to defer visitors (if desired) and/or how to set up a visit schedule.

Supporting the network: Emotional support

Allie: At times in the pediatric world, visitors can feel like they don’t know what to do or say, and they may struggle with feelings of inadequacy as a support or like their role in the child’s life is unimportant, possibly because they are given that message by the patient who might ignore them or have low energy, or perhaps the parent did not acknowledge them as they expected. It is important to thank anyone who visits while you are there and acknowledge that it can be difficult to know what to do or say and that their time shows they care. It can also be helpful to offer them the same presence that you would offer a patient or family. Offering a silent, safe space for these visitors can allow for them to share about whatever they are feeling or thinking about. Possibly they are burdened by a “normal” life problem that they feel they cannot share with the parent. Perhaps they are feeling that their own relationship with the patient has been devalued because s/he is not their child, but perhaps still holds a significant role in their lives that you can acknowledge and validate without criticizing the parent for how s/he is handling it.

Lizzy: If we are present when the patient has visitors, one of the best things we can do for the visitor is to acknowledge their relationship to the patient. If the patient is non-responsive, our role may be one of education. We can inform the visitor of the patient’s ability to hear. We can give them suggestions for what they can do for the patient, such as apply washcloths to forehead, sing, tell stories or pray. We can facilitate storytelling and life review by asking questions. We do have to be careful about the information we provide if the visitor is asking questions and they are not on the approved HIPPA list. Even if we do not talk about patient condition, we can give general information about symptoms that the visitor observes.  If the visitor brings food for the patient, we might provide general educational information about how the patient may not have an appetite.  Finally, we can inform the visitor how to access bereavement services if they are desired.

Suggested interventions: Acknowledge the visitor’s feelings and allow space for them to explore what they need from you and how you might meet these needs without taking away from the family.

More social work posts on Pallimed

Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. You can find her on Twitter @alifrumcally.

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW


Monday, May 9, 2016 by Lizzy Miles ·

Wednesday, April 27, 2016

Measures that Matter in Advanced Illness Care

by Meredith MacMartin

I was drawn to the field of palliative care by something subjective, the feeling of deep satisfaction from providing goal-aligned care for my patients, and the desire to do that better. In training, I came to realize that while much of our work lies in the qualitative realm, the key to doing it better lies in the underlying structure and frame of good communication, symptom management, and care coordination. It is no surprise to me, then, that palliative care is embracing the increasing emphasis on healthcare quality and value; in other words, the quantitative measures that underlie the qualitative experience of our patients and families. I was gratified to see the number of sessions at this year’s AAHPM Annual Assembly that were focused on this topic, and was especially interested in the discussions around the less easily measured aspects of the care that we provide. Many of the metrics that have been tracked and reported in the palliative care field have focused on expenditures and resource utilization, and I for one have struggled with how to collect and organize data on the actual quality of the care I’m providing.

So what does high quality palliative care look like? How do we measure quality of life parameters in an efficient and meaningful way? How do we measure the alignment of a patient’s care with his or her goals? How do we measure the ways in which we impact their experience of advanced illness?


Please join NQF's National Quality Partners and the Coalition to Transform Advanced Illness Care (C-TAC), co-hosts of the Wednesday, April 27 (9 pm-10 pm ET) #hpm TweetChat, "Measures that Matter in Advanced Illness Care."  

TweetChat topics:

*             Q1 What is the most important aspect of care delivery that you or your organization currently measures to assess quality #hpm?

*             Q2 How are quality measures integrated into staff performance evaluations & to whom do they apply (leaders, nurses, chaplains, etc.)?

*             Q3 What do individuals & their families see as the most important marker of quality #hpm care?

*             Q4 If you could identify one measure to capture overall #hpm quality, what would it be?

*             Q5 If you could add one policy that would improve the delivery of #hpm, what would it be?

#hpm TweetChats take place every Wednesday at 9 pm ET and began in 2010 to bring people together to discuss a broad range of hospice and palliative medicine topics, learn from interdisciplinary perspectives, and empower everyone to become advocates for high-quality advanced illness care.

Supported by The Research Retirement Foundation, this TweetChat builds on an NQP initiative to promote high-quality care for adult patients of all ages with advanced illness. NQP and C-TAC are working together to galvanize diverse stakeholders to action and maximize their collective impact.

Meredith MacMartin is a palliative care physician at Dartmouth-Hitchcock Medical Center (@DartmouthHitch) and @GeiselMed. She is also one of the moderators of #hpm chat.

What: #hpm (hospice and palliative med/care) chat on Twitter
When: Wed 4/27/2016 - 9p ET/ 6p PT
Host: NQF’s National Quality Partners  and Coalition to Transform Advanced Illness Care

 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.

Wednesday, April 27, 2016 by Meredith MacMartin ·

Monday, April 25, 2016

Making Palliative Care Stand out on Capitol Hill - Apr 27 - Virtual Lobby Day

by Christian Sinclair

Sure all this political smack talk in a presidential election year has probably got you a little bit jaded and tired. Yet, you have a chance to make a difference in lives of people you will never see by helping solidify the foundation of education and training for palliative care and hospice.

This Wednesday April 27, 2016 is designated as the Virtual Lobby day for PCHETA (Palliative Care and Hospice Education and Training Act). On Wednesday, advocates from over 30 different organizations are working together to tell their legislators about PCHETA and why it should be supported in both the House and the Senate. The AAHPM is one of the lead organizations on this of course, and they have a great guide to help you through the process in addition to their easy to use legislative action center.

I have participated on behalf of AAHPM in two Hill days, where I have visited my Kansas legislators in person. The experience opened my eyes to the importance of telling our stories of palliative care and hospice, because if we don't there are plenty of other people waiting to talk to your Senators and Representatives. The National Stapler Union, The Coach Bus Drivers Organization, and others. If they care enough to tell their stories and needs, shouldn't we advocate for our patients and families as well?

Some simple things you can do after you first become familiar with the bill:

  • Copy this post and send it to your peers in the field!
  • Print off the AAHPM Virtual Lobby Day FAQ and bring it to team!
  • Mark your calendars for Wed April 27th so you do not forget! 
  • Post a message of support on Facebook, Twitter, Instagram, Tumblr and include some of the following hashtags: #PCHETA, #HR3119, #S2748, #hpm and tag your legislators! Email works too!
And don't worry if you miss Wednesday - just get anything in this week to make sure it fits in with the buzz.

We have a great social media presence as hospice and palliative care professionals. So let's put this social media army to some good use and join in on Virtual Lobby Day.

Christian Sinclair, MD, FAAHPM is the editor of Pallimed, president of the American Academy of Hospice and Palliative Medicine and no longer skeptical of the democratic process.

Monday, April 25, 2016 by Christian Sinclair ·

Pallimed | Blogger Template adapted from Mash2 by Bloggermint