Thursday, June 8, 2017

Perusing ASCO 2017 - AKA Time for Lorazepam

by Drew Rosielle


The Annual Meeting of the American Society of Clinical Oncology was last week. It’s been my observation over the years that much of the best palliative-oncology and supportive-oncology research is presented at ASCO each year, before it’s actually published (if it ever gets published).  So I always dig through the palliative/EOL/supportive/psychooncology abstracts each year to see what's happening. Below is a gently annotated list of the abstracts that caught my eye the most, for your perusal and edification. Undoubtedly, these are my idiosyncratic choices, and if you want to dig through all of them you can browse the abstracts by category here. A couple additional comments first.

One of the big headline trials was a supportive oncology trial showing that regular tablet-based symptom assessment in cancer patients prolongs survival.  Christian promises me he's going to do a deep dive into the symptom tablet trial so I won't really talk about it here.

It’s interesting however to compare it to one of the other major headlines which was about abiraterone for advanced prostate cancer. People went nuts for this study, although if you dig into the results they’re pretty modest (3 year survival 83% in the abiraterone vs 76% in the placebo group), but in cancer trials that’s typical. I’m not knocking the study, they are good results, I’d undoubtedly do abiraterone myself, but there’s often a big disconnect in the headline findings in cancer research and the actual, real, patient-relevant results. Lots of money to be made and spent on abiraterone, which is why it’s gotten so much press. Full paper here:http://www.nejm.org/doi/full/10.1056/NEJMoa1702900#t=abstract


The symptom-assessment trial got great press, to be fair, but far less than abiraterone (see this WaPo puff piece which totally ignores the symptom trial, but does talk about abiraterone and the gobs of industry money slushing around ASCO, which makes me, and I hope many, many oncologists, nauseated).  


Here are the other abstracts which caught my eye, loosely organized, and mildly annotated. (I should note that my annotations are summaries of the findings - keep in mind these are abstracts, not full publications that have been through peer review, we can't really look at the methods, so when I say that the abstract shows that X is effective for Y, that's me summarizing the abstract, not endorsing the veracity of the findings.) Also, if you're an author, and I misrepresented your findings, shame me in the comments and I'll append edits in the permanent post. 

1. A RCT of pretty high doses of lorazepam vs placebo, plus haloperidol for EOL agitation, showing that the addition of lorazepam helped. This got a lot of chatter on Twitter, especially about how it compared to the RCT of low dose haloperidol/risperidol for delirium.  I think it’s validation of the idea that it’s imperative to keep in mind the therapeutic goals with regard to delirium and agitation. Ie are we trying to sedate someone (=suppress the agitation behavior) or are we trying to improve the delirium? The first we can do, as this abstract shows, quite easily with a good dose of a benzodiazepine; the second we still lack any convincing data about any effective strategy in our late-stage patients, despite the widespread observation (belief?) that haloperidol & similar agents help.  Good stuff and I hope it's published in full soon:  http://abstracts.asco.org/199/AbstView_199_181607.html
  
2. A study looking at chemotherapy and palliative consultation in ICUs:  http://abstracts.asco.org/199/AbstView_199_192587.html 

3. Another study showing helpful effects of early palliative consultation in hospitalized cancer patients:   http://abstracts.asco.org/199/AbstView_199_190938.html 

4. A study looking at the relative stability of treatment preferences in advanced cancer patients over time:  http://abstracts.asco.org/199/AbstView_199_192725.html 

5. A study looking at Latinos & EOL preferences, including the generational effects after immigration: http://abstracts.asco.org/199/AbstView_199_193461.html 

6. A study about patient-caregiver agreement about goals: http://abstracts.asco.org/199/AbstView_199_192587.html 

6. A study looking at the natural history of fatigue in breast cancer survivors for 6 months. I wished they followed for even longer and hope they come out with data at years 1, 2, 3 and beyond: http://abstracts.asco.org/199/AbstView_199_182648.html 

7. A mobile CBT app for anxiety in cancer patients does very little: http://abstracts.asco.org/199/AbstView_199_194370.html 

8. A study looking at what healthy people say about whether they'd want 'palliative' vs curative chemo for AML, hypothetically speaking. Interestingly, responses seemed to be more fixed (fixed beliefs about whether chemo is worth it or not) than based on the information provided about different levels of side effects. This sort of research is fascinating, but I always worry that what healthy people say in a survey about a hypothetical question is very different from what they do when actually facing a life-threatening disease. The same problem with statements people make when they are healthy, and even put into health care directives. "Uncle Joe would never want to go to a nursing home." That sort of stuff - ie does it actually mean Uncle Joe would rather choose to die this month than go to a nursing home - how do we actually interpret the prior statements, etc. Anyway:  http://abstracts.asco.org/199/AbstView_199_192439.html 

9. A fascinating study about potential interactions between depression, and depression treatment, and length of stay in  hospitalized cancer patients:  http://abstracts.asco.org/199/AbstView_199_188306.html 

10. A cocoa-based balm for onycholysis in chemo patients. There were 2 onycholysis abstracts this year. Why not?  http://abstracts.asco.org/199/AbstView_199_186790.html 

11. A mildly promising pilot study lactoferrin for chemo dysgeusia:  http://abstracts.asco.org/199/AbstView_199_191178.html 

12. Several studies of olanzapine for chemo nausea/vomiting (CINV). One showing it's more effective for emesis than nausea?:  http://abstracts.asco.org/199/AbstView_199_185558.html. More data for olanzapine: http://abstracts.asco.org/199/AbstView_199_181353.html. And in case there was any doubt, here's a metaanalysis of olanzapine for CINV demonstrating its effectiveness:  http://abstracts.asco.org/199/AbstView_199_187470.html 

13. A follow-up, with longer term data, from the RCT of palliative care for stem cell transplant patients showing improvements in depression and PTSD, but not other outcomes, at 6 mo: http://abstracts.asco.org/199/AbstView_199_188285.html. Earlier publication here: https://www.ncbi.nlm.nih.gov/pubmed/27893130 

14. Predictors of aberrant drug behavior in a cancer center population (helpful, and it’s exactly what you’d expect it to be, because they are the same predictors in the healthy population): http://abstracts.asco.org/199/AbstView_199_192505.html  

15. Yes, transbuccal fentanyl helps for dyspnea: http://abstracts.asco.org/199/AbstView_199_181614.html 

16. A RCT of minocycline for chronic myeloma pain (!) which showed promising results (phase II, better trials are needed). I vaguely had a sense minocycline had antiinflammatory effects, but apparently it could have analgesic effects too. Really looking forward to a study which hopefully looks at long-term safety and efficacy: http://abstracts.asco.org/199/AbstView_199_186197.html 

17. I hadn’t known this but there is actually a RCT showing that l-carnitine WORSENS taxane CIPN. Ugh. I have never used it due to lack of data showing efficacy, but hadn't realized it was probably toxic and still see patients on it sometimes. If one needed reminding that all these herbs, supplements, and so-called alternative treatments aren't these bland, safe, anodynes this is a good reminder. Science-based medicine is what our patients need and deserve. This abstract is a follow-up to the study showing it was poison:  http://abstracts.asco.org/199/AbstView_199_184547.html 

18. A deeper look at the truly nasty neurotoxicities of anti-PDL1 drugs (the major class of cancer immunotherapies). Little is known about this (I've now seen one case) and we will see more and more of this as these drugs are more widely used:  http://abstracts.asco.org/199/AbstView_199_191534.html 

19. Finally, and whoa -- single fraction is as good as multi-fraction radiation for cord compression. At least in patients with poor long-term survival (median survival was 12 weeks in this cohort). I look forward discussing this with my rad onc colleagues, as it would be a very welcome option for patients with less than 3 months to live so they didn't have to spend 2+ weeks of that time getting radiation: http://abstracts.asco.o/199/AbstView_199_186591.html

Thursday, June 8, 2017 by Drew Rosielle MD ·

Saturday, April 1, 2017

Stand Up! For Each Other as the Year Marches on

By Vickie Leff

Stand Up! was 2017’s theme for Social Work Month. As many of us know, social workers are excellent advocates; advocacy it is a core skill that is integral to our teaching, profession, and interventions. In celebration of that theme, as March concludes, I want to challenge you to spread that enthusiasm and charter across the palliative care universe this year. After all, palliative care is a team sport, defining itself not whole until a physician, nurse and social worker (at a minimum, with ideally many more disciplines involved) are members. This is not a random collection of professionals, but a calculated necessity based on evidence of how the best care can be provided.

But the world of medicine, where most of our patients live, has many silos and doesn’t often work as an interprofessional team. The administrators we work with, who are responsible for the growth of our programs, may not be accustomed to such an interprofessional collaboration and often have to account for more factors than just best evidence based care. All the more reason for all members of the team to Stand Up! for each other. It is not enough for the physician to lobby for more physician positions without the unwavering support of their nurse and social work colleagues; or a nurse practitioner without the other professionals bringing their voice to the discussion.

https://www.socialworkers.org/pressroom/swmonth/2017/logos/JPG-2017SWM-LogoWeb.jpg
I worry that the long history of hierarchy in medicine may lull us into forgetting we must stand and fall as a team. I have been at the table, filled with palliative care providers including physicians and NP’s, when news has come down that an additional social work position would need to be put on hold, and everyone immediately looked at me for my reaction. I was disappointed with the news, but surprised that everyone only looked at me. I said, “this should concern everyone, not just me as the social worker”. After all, it isn’t about one professional but all of us together providing the best care, with our distinct scopes of practice and shared goals.  Our programs are only as good as each member of the team and the care each can uniquely and synergistically provide.

This is hard work we all do in the field of palliative care; it takes its toll on us emotionally. Some days we feel we make no difference at all and other days can be full of meaning and reward. Doing the work by ourselves, however, is dangerous and although necessary to get the work done, is never palliative care at its best. We must be vigilant about reminding ourselves and colleagues about this as we struggle through the day to see 11 new consults on top of the 25 already on the list. Standing up for each other is one way to remind ourselves that we are equally important, each have something vital to bring to our patients and families.

It is exhausting work, but we mustn’t let that tire us from voicing the support we all need to be the best team possible. I will stand up for our NP’s, our physicians and social workers. Without one of them, we all fail. Our patients need all of us, not just one. This is what makes palliative care so impactful to individuals and families; we tend to the whole of patient and their family. Just as we tend to our patients, we must stand up for all of us.

Vickie Leff, LCSW, ACHP-SW, BCD is the clinical social worker for Palliative Care at Duke University Hospital. She uses running and humor (not at the same time!) as her primary coping mechanisms. You can find her on Twitter at @VickieLeff.


Image Courtesy National Association of Social Workers, https://www.socialworkers.org/pressroom/swmonth/2017/logos/JPG-2017SWM-LogoWeb.jpg 

Saturday, April 1, 2017 by Pallimed Editor ·

Monday, March 27, 2017

Looking Forward to #hpm Chats in 2017



In July 2010, Christian and I had a conversation about finding ways to bring people together online to connect, collaborate and learn more about topics in hospice and palliative care. We had seen some fascinating discussions with #hcsm, the health care social media community and decided to launch the #hpm chat as a weekly interdisciplinary discussion of issues in hospice and palliative care. I never imagined how this idea would develop into such a vibrant community where caregivers, doctors, nurses, social workers, volunteers and people with a variety of experiences have joined in to discuss topics on our weekly conversations.

The healthcare hashtag project launched that Fall which bloomed into an awesome resource for learning about various healthcare communities, conferences and conversations.

The #hpm chat community taught us early that online communities are powerful, meaningful and had impact beyond online relationships. What often started as a “Twitter Buddy,” turned into cross-border (and cross-specialty) friendships that may have started on online, but eventually, led to phone calls, dinners, parties, coffee meetings and rich dialogues about ways we can work as a community to advance public understanding of issues in #hpm as well as drive progress within the field.

The relationships that have been built over the years have been well beyond people specializing in hospice and palliative medicine. I have fond memories of hopping on the phone with Jody Schoger about the importance of #hpm and #bcsm (the breast cancer social media community) and how energized we were about gathering with people that shared our passions online. This of course is just one example of someone who started as a Twitter buddy, which evolved into someone who, for years, would jump on the phone and engage in lively discussions about how we can make sure attention is given to the human experience of care. I had the benefit of having our phone calls evolve into a few dinners each year at various events and this friendship is one of many relationships that I cherish, and can credit to engaging online around issues in hospice and palliative care.

It has been absolutely incredible to see the development of healthcare communities online, and of course, to see how #hpm has evolved and grown over the years. For some data on this, below is a quick overview of the number of Tweets and impressions generated each year on the #hpm hashtag.


While I know in his last post, Christian did a call out to the organizers that have worked behind the scenes with the #hpm chat over the years, I have to echo this and give another major thank you to the AMAZING people that have hosted, given topic ideas and especially to the people that have been #hpm organizers. What many people don’t always see is the incredible amount of planning, coaching and behind the scenes work that these #hpm power organizers have dedicated to making this community what it is today. So thousands more special thank you's to people that have played a major role in organizing the chat over the years, Alicia Bloom, Meredith MacMartin, Ashley Deringer and Niamh van Meines, and of course #hpm cofounder Christian Sinclair.

After six and a half years of hosting the chats weekly and over 300 live discussions, we recently took a couple of months to take time to reflect, and plan for innovative ways to structure conversations about hospice and palliative care. We wanted to make sure we were thinking creatively about new ways to raise the bar for content, discussion topics and making these conversations more accessible to people that are not active on Twitter.

We have received a lot of feedback about how meaningful the community has become to people. Many people see this as a form of self care, because in our local communities we may not have as many neighbors that are passionate about discussing the latest articles, policies and experiences with advance care planning, early palliative care, centering healthcare around the goals of patients and families, as well as hospice and end of life care. Online, however, regardless of location, the #hpm chat has been a staple for the enthusiastic group of people who are passionate about designing a better experience for people facing serious illness. As Reid Hoffman, has often stated, we “found our tribe.” As organizers, we share this strong sense of purpose and enthusiasm with the #hpm chat community and appreciate the everyone’s patience as we’ve taken a short break to think creatively about planning for the chat’s future.

What’s Next for the #hpm chat?
We’ve decided that for the remainder of 2017, we will be moving from weekly chats to facilitating the #hpm chat at 6pm PST/9p EST, on the last Wednesday of the month. This is something that we're going to try and are open to the community's feedback through the year.

The 2017, #hpm chat director, Meredith MacMartin is a palliative care physician, director of the inpatient clinical palliative care service at Dartmouth-Hitchcock Medical Center, and assistant professor of medicine at Geisel School of Medicine. Meredith has been key in organizing new ideas for #hpm in 2017 and shared that she is most excited to be able to take a deeper dive into topics and present a forum to talk in depth about the issues in hospice and palliative care. Meredith, Christian and I have been actively discussing ways that we can be more inclusive to the larger community of people that are major contributors in hospice and palliative care but may not be active on Twitter.

We are working to broaden opportunities to include more people in  our conversations.


As Christian said, “taking time to to reboot and refresh is always good,” so with that #hpm’ers, we invite you to mark your calendars for our 2017 #hpm chats!

The last Wednesday of the month at 6pm PST/ 9pm EST:
  • March 29th, 2017 
  • April 26th, 2017 
  • May 31st, 2017 
  • June 28th, 2017 
  • July 26th, 2017 
  • August 30th, 2017 
  • September 27th, 2017 
  • October 25th, 2017 
  • November 29th, 2017 
  • December 27th, 2017
If you come across articles or have ideas for upcoming chats, please share them with the team!


Cheers #hpm'ers to a fantastic 2017! Happy tweeting, see you Wednesday! 

Monday, March 27, 2017 by Renee Berry ·

Wednesday, March 22, 2017

SWHPN 2017 Conference Reflection

By Abigail Latimer

Although I have three years of hospice clinical social work, I am only six months into my career with inpatient palliative care. I learned about SWHPN (Social Work Hospice & Palliative Care Network) and quickly applied and received the scholarship to attend the conference. It was beyond any previously held expectation and I left in awe of the work that is being done from around the country and world. As I sat next to great leaders like Dr. Grace Christ, Terri Altilio, LCSW and  Shirley Otis-Green, LCSW, OSW-C (to name a few) I felt humble and as Susan Blacker, MSW, RSW and Susan Hedlund, LCSW, OSW-C described during their accidental leadership presentation, I thought to myself “oops, maybe I am not supposed to be here!”

The week was full of encouragement to pursue research and take advantage of leadership opportunities with strategies and words of advice to guide you. We heard from Andrew MacPherson who reminded us to stay calm, there are positive conversations in Washington and time is on our side regarding changes with the ACA. We were reassured the calls to legislators and other political leaders helps and to keep “demonstrating the hell out of it” to see change.

Myra Christopher and Susan Hedlund approached the all too familiar topic of PAD, reminding us to support our patients first and remember there are “good people on both sides of the debate.” Agreeing we all want to see changes in the way we provide care to those at end of life.

The Consensus Project and efforts to establish Hospice and Palliative Care credentialing are well under way and we were asked to send our job descriptions to Dr. Barbara Head. The theme “there’s not enough of us” kept resonating throughout the sessions, leaving an open invite for advancement in our field, but also the overwhelming feeling of responsibility.

Emerging leader Anne Kelemen, LICSW joined her colleagues Vickie Leff, LCSW, BCD and Terri Altilio, LCSW to end the conference reminding us our language has power. I desperately wished for my pen to magically absorb their knowledge as I frantically scribbled down their words. As social workers we are given the honor to hold our team members and other professionals accountable to recognize distortions, make the implicit explicit and remove the burden of blame from our patients and families. Also, don’t forget to look for the humor as the situations we deal with are absurdly difficult.

I, like many others, came to this conference wanting information, a new skill or technique to help my patients or ways to connect intra-professionally. However, I left- we all left- with so much more. I will move forward with the confidence to invite myself to the table to not only provide a knowledge and skill set but also to learn and respect other perspectives. Of course this is easy when I know the supportive community of SWHPN is all in.

My notes from the week reflect numerous ideas with strategies and potential supportive contacts.  Generated ideas include hospital wide bereavement protocol, social work journal club, caregiver support group, methods of teaching my student and development of a social work student handbook.  Ambitious? Yes. Possible? Absolutely. Not before mentioned, however, is the unquantifiable takeaways; the things you cannot quite put into words. The way I look at patients and families on day one post-conference has changed. The way I carry myself, the language I choose, the attitude and approach to each situation has evolved in such a way that my work will never be the same. I am happy about this, but mostly because the people I serve, will benefit the most.

Abigail Latimer, LCSW is a Clinical Social Worker for Palliative Care at the University of Kentucky Hospital in Lexington, KY.  She is currently researching the ability of case managers in a hospital setting to identify and respond to bereavement needs in a hospital setting and seeking her doctoral degree at the University of Kentucky College of Social Work. She is an avid health and fitness enthusiast and most recently had surgery to repair her shoulder following a wrestling injury. And yes, she was the wrestler. You can contact her at abbie.latimer@uky.edu.

Wednesday, March 22, 2017 by Pallimed Editor ·

Monday, March 20, 2017

Book Review: Gratitude by Dr. Oliver Sacks

By Karen B. Kaplan

Reading  Dr. Sacks’ farewell book with its mournful black cover was like going through a typical day on the job as a hospice chaplain. Just like my patients, this famous author, well-known for his medical narratives such as The Man Who Mistook His Wife For A Hat: And Other Clinical Tales lists his regrets, his triumphs, his hopes, and his efforts to make sense of the life that he had led. In a word, this book is about how he dealt with his approaching end. Many of us can relate to his regrets, which included wasting time, being shy, and not traveling more. He also hoped to love and work as long as possible; again, much as the average person might yearn for in this circumstance. He also mentioned his regret at not having learned a second language.

Finding out what he had to say about his own medical narrative may interest those who almost never hear about or think about what it means to review one’s life as death nears, but for me I initially found that very predictable. Nevertheless, because he expresses it so eloquently,  even as a jaded clinician, I became more and more captivated by his life review. More than that, reading this little book became a ritual means for me to say goodbye to this spectacular and compassionate doctor. For example he explains, “[As I get older] I begin to feel not a shrinking but an enlargement of mental life and perspective…One has seen triumphs and tragedies, booms and busts…One is more conscience of transience, and perhaps, of beauty….One can take a long view and have a vivid, lived sense of history not possible at an earlier age.”

The book was engrossing in so many other respects as well. Like his other works, he offers a distinctive view that makes it a privilege to saunter among his words. Who else would link the number assigned to each element in the periodic table with one’s age? He opens his essay entitled “Gratitude” by saying, “Mercury is element number 80….on Tuesday I will be 80 myself.”  He goes on to say that  when he was eleven years old that instead of referring to his age, he explained, “I could say ‘I am sodium.’”  (Sodium is the eleventh element). Such an association alone should be enough to entice the scientifically minded and the intellectually curious to get this book.

It is poignant to read that his defense mechanism for dealing with loss was to “turn to the nonhuman.” It saddened me to learn that when he was sent away to a boarding school, “numbers became my friends.”And that “the elements and the periodic table became my companions.”

The last chapter is entitled “Sabbath.” Here he mentions his Orthodox upbringing, and his growing indifference to the practice of Judaism and finally his rupture with it when his mother utterly rejected him when she found out he was gay. Much later in life, he was introduced to positive experiences of the Sabbath and found he could enjoy its peace not only on the seventh day of each week, but on the “seventh” day of his life as well.
The act itself of perusing the book is a sort of Sabbath. It causes the reader to reflect, to pause, and to savor existence. “I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.”

Karen B. Kaplan has been a board certified hospice chaplain for eight years, and is currently serving Center for Hope Hospice in Elizabeth, NJ. She herself has captured end-of-life narratives from her patients in her book, Encountering The Edge: What People Told Me Before They Died. (Pen-L Publishing, 2014). Karen finds balance in her life by reading gentle science fiction (where the robots are friendly and not a weapon in sight) and teaching English as a Second Language.

Monday, March 20, 2017 by Pallimed Editor ·

Sunday, March 19, 2017

Why I Became a Certified Hospice and Palliative ICU Nurse

by Lori Ruder

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

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

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

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

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

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

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

Sunday, March 19, 2017 by Pallimed Editor ·

Friday, March 17, 2017

Preparing to Show Up: Nature Practices that Serve

By Jennifer J. Wilhoit


We give so much of ourselves as hospice and palliative care service providers. And we grow accustomed to the moment-by-moment changes, depth of interaction, the poignant or blessed final goodbyes that characterize this work. Some of what we do feels very positive: the deep gratification of tending to the needs of people who are chronically ill or dying and to their families. But it can also be wearying for us; we do not offer our expertise in a vacuum, or as something-other-than-humans. We have personal lives, are subject to the vagaries of daily existence, embrace relationships with family and friends that need attention and care, engage chores to maintain our lives.

Where in all of that is the refreshment?

This article offers some very basic nature-based practices that we can use on a regular—if not frequent—basis with little preparation in moments in which we find ourselves: depleted, enervated, or in need of clarity. I have been a hospice volunteer for more than sixteen years, while also serving the deep needs of people in transition through my private professional practice. What I’ve learned from both of these endeavors is that showing up to “the other” in an engaged, dynamic manner is not only essential for them; I must show up to myself in such a way, too. We need to maintain a daily connection to fluidity in our lives.

The series of articles I offer to readers of the Pallimed blog addresses precisely this; the piece you’re reading now focuses on ways in which we can remain vibrant via the natural world. They are not intended as a panacea, but rather as touchstones of nature as balm. Each can be done quickly, at the center of our busy workday. These practices can also be used, with modifications, directly in our daily interactions with those we serve. They are totally malleable: adaptable to specific needs and desires, flexible per the conditions in which you work and live. I recommend opening up a pause in your schedule and routine. These practices don’t have to take a long time or detract from our responsibilities. I have done many of these within moments of my next client appointment, or around the corner from the next hospice family.

All of these small, simple acts can restore us, thus allowing us to really show up to ourselves as well as to those we serve. I offer them in three categories: practices that nurture, practices that inspire, and practices that offer insight.

Nature for Nurture

For you:
  • Sit in a comfortable place outside.
  • Breathe intentionally with nature.
  • Recall a time you felt especially calm in nature.
For those you serve:
  • Take with you to patient visits: rose petals, smooth rocks, or a few shells.
  • Offer an opportunity for touch or smell for those objects that are soft or fragrant.
  • Consider leaving a small nature item with a patient, family member, or facility staff.

Nature for Inspiration

For you:
  • Create something beautiful in nature, such as a circle made of stones or leaves.
  • Bring nature inside your home or into your workspace.
  • Photograph something inspiring in the natural world and carry it with you.
For those you serve:
  • Take some nature item representative of the season into your patient visits (i.e. colorful leaves, a bowl of snow, a vase of rainwater, spring wildflowers).
  • Share a beautiful nature photograph with your patients or family members.
  • Read a short stanza of nature writing or nature poetry aloud to someone (this also serves you).

Nature for Insight

For you:
  • Take a work issue on a walk or hike. Even a short, speedy walk around the block can lend a new perspective.
  • Focus your attention on a tree or favorite structure in/of nature as you contemplate a dilemma.
  • Consider the four seasons and notice which one you are experiencing on your inner landscape today (e.g., emotionally, spiritually). Imagine that: summer = flourishing, autumn = blaze of beauty, winter = rejuvenation or preserving energy, and spring = new growth.
For those you serve:
  • Take to a patient a small object from nature that they’ve spoken about. Maybe you bring inside something they can see out their window.
  • Offer a photograph of a landscape similar that in which a patient has lived.
  • Spend a few moments talking with a patient about some object/image of nature they have in their room.
    (The latter two can be very evocative, facilitating a person’s life review process.)
The work we do on behalf of others—even out of passion and clear calling—does demand a lot of us. Please try these easy practices. Their power is in repetition, hence the word “practice.” Test out one on a daily basis; or try several over the next week. Modify them to suit your work schedule; most of all, adapt them to best meet your individual, nuanced, fluctuating needs from moment to moment.

May you find yourself refreshed, inspired, clear-headed and clear-hearted as you go about your day.

Jennifer J. Wilhoit, PhD is a writer, spiritual ecologist, & longtime hospice volunteer. She founded TEALarbor stories through which she compassionately supports people's deep storying processes. She lives on an island in the Pacific Northwest. You can find her on Twitter at @TEALarbor.


All photographs in this story are copyright @TEALarbor Stories.

Friday, March 17, 2017 by Pallimed Editor ·

Wednesday, March 15, 2017

On Language: Why We Should Avoid Saying "So Young"

By Amanda Hinrichs

There is a brief phrase I hear uttered in the halls of the clinic or the hospital, a phrase I have said myself, and it’s a phrase that concerns me. This phrase, “so young,” is uttered by new and experienced clinicians, often when talking about patients who are seen as being too young for the illness(es) they have. This phrase conveys objectivity and societal statistics, but is also laden with personal judgement, empathy, and sadness.

As I enter my career in adult palliative medicine, I have been thinking more and more about the importance of language and the way we, the medical community, convey complicated medical information to patients, families, and other medical professionals. This is especially salient as our patients are living longer, and often more medically complex lives.

In early medical education, we are taught to briefly present a patient to our colleagues using age (along with gender and race/ethnicity) as the first piece of data. Within a few seconds of learning about a patient, we begin to create a mental image of them in our mind, without ever seeing the patient or hearing about their medical history. We often think very differently about patients when they are 90 years old vs 30 years old, regardless of the illness they may have. People who are younger have, on average, a better chance of recovery from illness, surgery, or injury than someone who is elderly; but I am not talking about a healthy 35-year-old teacher who develops a severe pneumonia and ends up dying in spite of aggressive and appropriate medical care in the ICU. The patients I am talking about who get labeled as “so young”may be far away from retirement age, but have lived with chronic, debilitating illness that many 80 or 90 year olds will never experience.

We often use life expectancy data as a general marker of how good our healthcare is. Overall life expectancy for those born in the US in 2015 is 78.8 years, and many of us use this number, consciously or unconsciously, when determining “old vs young,” even though this number does not factor in quality of life or morbidity. When we label seriously or chronically ill patients as “so young,” either in our minds or to our colleagues, we may not allow for an honest and open conversation about medical choice or prognosis until these patients end up in the ICU sedated on a ventilator, with little chance of leaving the hospital.

By labeling patients as “so young,” we may not allow patients to understand their age and their medical problems are not dependent variables.

By labeling patients as “so young” we may limit our recognition that the lives of these patients have often been paternalistically directed by tests, labs, procedures, and operations without the chance for open shared-decision making.

By labeling patients as “so young,” we may not accept death as an outcome.

As healthcare providers, we are continually trying to see our patients with an open mind, unbound by stereotypes, bias, or personal beliefs, and I think age is one more variable we need to be aware of as we strive to see our patients as honestly as possible. If you hear the phrase “so young” or say this phrase internally, explore what this means, and how this may affect the care of your patient. By doing this, we can respect the medical conditions our younger patients have lived bravely and strongly with for months, years, or their entire lives, and remember that age does not discriminate when it comes to illness.


Amanda Hinrichs is a palliative care fellow at the University of Minnesota. She is "kinda" on twitter @a_hinrichs

Wednesday, March 15, 2017 by Pallimed Editor ·

Wednesday, March 1, 2017

Bringing Humanity Back to Medicine: A Book Review of "Attending" by Ronald Epstein

by Lyle Fettig

When debriefing after a difficult communication encounter led by a fellow or resident, I’ll often start by asking the trainee, “how do you think it went?” There are times when I thought the encounter went very well, yet the trainee leaves the room with a worried look. Perhaps the trainee clearly explained the medical facts, demonstrated ample empathy, and carefully talked about the next steps, so I’ll be a bit surprised when the trainee says, “It went horrible.” I’ll ask why, and I’ll get a bemused look in response. “Because I made the patient cry,” the trainee might say. Usually, when this happens, the trainee knows that it was the serious news that made the patient cry: A change in condition, a revelation about prognosis, etc. Deliberate reflection on skillful communication requires some understanding that while patients may respond differently to various communication techniques, we are ultimately not responsible for the patient’s emotional response to serious information. Even if giving the information was the ethical and pragmatic way to proceed, the physician is at risk for experiencing strong emotions that mirror those of the patient’s. The response of the patient and the physician’s experience of observing the response might make some second guess whether they have approached the conversation skillfully, even when they have.

“Attending: Medicine, Mindfulness, and Humanity” by Dr. Ronald Epstein, professor of family medicine and palliative care at the University of Rochester, is all about how physicians cognitively and emotionally process not only moments like this one, but also the more routine moment to moment emotional roller coaster of the practice of medicine. It’s a practice that is rich with cognitive complexity but always mingling with emotional intensity: Anxiety over making correct diagnoses or missing something. Frustration about electronic medical record systems. Helplessness when faced with symptoms we cannot explain, or sometimes cannot alleviate adequately.

We all experience these thoughts and emotions in our own way, and all develop methods (sometimes adaptive, sometimes not so adaptive) to respond to our inner experience. Dr. Epstein blends a mix of his own experience (which he describes with vulnerable humility), the experience of colleagues, and a description of some of his own research (example here) as well as related research in neuroscience, decision-science, and resiliency. The result is a readable, thought-provoking, useful, and comforting book that I’d recommend to any physician, or for that matter, any health care professional.

The book starts with a chapter on mindfulness in the practice of medicine and then a chapter on the related concept of “Attending” which describes our human ability to attend to a limited number of stimuli at once, leading to inattentional blindness (which none of us are immune to), and why this contributes to the challenges of medical diagnosis and management as well as why it may be so hard for us to recognize the experience of the patient at times. Even for people who are highly empathic, there’s still a risk of losing sight of the other person’s perspective when you’re lost in clinical reasoning, etc. He then further expands the discussion to the topic of uncertainty, and how we in medicine are certainty junkies, which brings with it a risk for crowding out curiosity. And that has negative implications.

Palliative care clinicians will especially appreciate his reflections on the concept of “presence” or “bonded resonance” in which two people are in touch and in tune with each other. Quoting philosopher Ralph Harper, he talks about the important role of presence in “boundary situations,” times of vulnerability and uncertainty. Philosophers and scientists alike have explored this resonance, and he describes two seemingly competing, but perhaps complementary, theories for how this happens. The first is “theory of mind,” where it’s thought that we theorize what might be going on in other’s minds, and might occasionally verify in communication if we understand their thoughts and feelings. The other theory is “embodied simulation” which posits that we “relive in our own bodies and minds the actions and presumed intentions of the other. He states that the current body of research comes to an intuitive conclusion: our cognitive and emotional lives are shared psychologically and neurobiologically, and boundaries between those sharing in presence are blurred.

This is a wonderment, and it reframes the feeling of dread that often goes along with breaking bad news. Yes, it's the information that makes the patient cry. It's information that the physician shares from his or her own mind to the patient's, who reciprocates with sharing emotion back to the physician. Although the physician has not "caused" the bad news, perhaps the feeling of responsibility for the patient's emotions stems from the blurring of boundaries?

I eagerly read the chapters on “Responding to Suffering” and “The Shaky State of Compassion” and agree with his supposition that while training in empathy is important, it only goes so far and there’s a real risk of emotional contagion- taking on the patient’s distress. Describing research about compassion, he describes “exquisite empathy” or compassionate action that may relieve the patient’s suffering and in concert, release the emotional tension that the clinician experiences.  (I would include plans that come about after careful goals of care discussions as "compassionate actions", and even the process itself, that involves a lot of sitting with patients and grappling.) The good news is that there is growing data that compassion can be cultivated through practices such as loving-kindness meditation.

The book closes with chapters on resiliency in both the individual clinician and in the healthcare system with compassionate suggestions for his colleagues that don’t aim to “fix” the problems of our broken healthcare system, but do aim to help us build capacity to respond to it. Everything he writes about complements, integrates with, and bolsters important communication skills commonly taught by palliative care clinicians.

You’ll have to read the book to see some of his suggestions, but I’ll leave this review on a personal note. I personally am not immune to burnout and anxiety, as well as occasional dysthymia and rarely, depression. I remember when I was just starting, our team’s chaplain asked me to notice my breathing in the middle of a visit with a very anxious man who was in pain as well. To my surprise, I was holding my breath, perhaps an embodied simulation of what I witnessed. I think of the multitude of simulations we process each day, with patients, their families…and with colleagues, and this is a timely book for our field and for medicine in general.

I think this book offers a framework to consider how we might become more resilient, yet I recognize that someone out there might be reading this right now in the midst of a personal crisis. If that's the case, I could imagine that hope might not come as easily as you would want.

So, I have one last heartfelt note for everyone, but especially for my physician colleagues. It comes from the experience in the past couple of years of losing a physician colleague to suicide.

Recent research indicates that burnout in HPM physicians is something we should pay attention to carefully.  It's an issue in medicine more broadly. Physicians have higher rates of burnout, depressive symptoms, and suicide risk than the general population. An estimated 300–400 physicians die by suicide in the U.S. per year.  Don't wait until a crisis point, it's ok to think of it as a quality of life issue!  Seek help if you are suffering. You may feel shame, but that's part of having depression and not because of who you are.

There are likely resources available to you locally at your own institution or in your community. If you are in crisis, you can also call the National Suicide Prevention Lifeline at 1-800-273-8255. There is no shame at all in reaching out- we need you in this world.

I'll leave everyone with a loving-kindness meditation:
May you be filled with loving kindness...
May you be held in loving kindness...
May you feel my love now...
May you accept yourself just as you are...
May you be happy...
May you know the natural joy of being alive...

Dr. Lyle Fettig is an Assistant Professor of Clinical Medicine in the Department of Medicine/Division of General Internal Medicine and Geriatrics. Dr. Fettig directs the IUSM Palliative Medicine Fellowship and works clinically with the Eskenazi Health Palliative Care Program.

Wednesday, March 1, 2017 by Lyle Fettig ·

Monday, February 27, 2017

Extremis Documentary Falls Short at Oscars, Wins Over Palliative Care

by Christian Sinclair

Last night at the Oscars, there sure was a lot of excitement for many of my friends and colleagues, and I'm not just talking about the surprise ending with La La Land winning Best Picture, then losing it in a tragic mistake of envelopes, to another well-deserving film Moonlight. That is because many of my friends and colleagues are strong advocates and wonderful clinicians who are vocal about excellent care at the end of life.

The film Extremis, which was released in April 2016 at the Tribeca Film Festival, was nominated for An Academy Award for Best Documentary Short Subject, but up against top competition did not end up taking home the Oscar. The winner last night was a film about the Syrian Civil Defense volunteer rescue workers called The White Helmets. The nomination for Extremis should really be considered a win, because now many more people are aware of it, and palliative care providers can use it as a discussion tool.

Extremis offers a glimpse into the hectic and fragmented world of the Intensive Care Unit and the decisions doctors, patients and families make when the chances of survival reach the limits. The clinician who we follow is Dr. Jessica Zitter, a Critical Care Specialist and board-certified palliative care physician.

We see glimpses of her conversations with a diverse group of patients and families, never lingering on one discussion too long. Many phrases will feel familiar to palliative care and ICU staff as hope, miracles, uncertainty, and staying positive all struggle to push back against the overwhelming weight of illness. Initially, I found myself being a little too critical of some conversations. "I would never say that," I would think to myself, until I recognized that I have said those things, but they were in the a certain context. Director Dan Krauss, doesn't always give you the context of the conversation that we often get when we work at the bedside each day. When trust is built you can broach the most difficult topics.
I found it interesting the filmmaking team decided not to highlight the buildup of trust and relationships, yet there is a reason for that. The real focus of this film is not Dr. Zitter, it is the people experiencing the illness, the patient and their family. It takes a while, maybe even after you are done watching it, to recognize that the small windows into how people think and fell their way through a critical illness and possibly dying, is the important take away here.

I'll be very interested to see how palliative care and hospice teams use this film to spur discussions within their own team or organization, or to engage the community to think about these issues before they find themselves in Extremis.

You can catch Extremis now on Netflix.

Christian Sinclair, MD, FAAHPM, is the Editor of Pallimed, and amateur film buff who once got to meet Dr. Zitter and the producer Dr. Shoshana Ungerleider at a conference and forgot to ask to take a selfie with both of them.

Monday, February 27, 2017 by Christian Sinclair ·

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