Monday, March 2, 2015
Have you ever read a journal article and as soon as you finished the abstract you had this forbidding feeling that if the authors actually proved what they claimed to have discovered your medical life will never be the same?
This happened to me when I read, “Functional Status of Elderly Adults before and after Initiation of Dialysis (OPEN ACCESS)” by Tamura et al. in 2009.
This study simply looked at the mortality and functional status of nursing home residents who initiated dialysis. The cohort consisted of 3,704 Americans. The average age of this predominantly white (64%) female (60%) cohort was 74 years. The outcomes were horrifying:
- Within three months of starting dialysis 61% had died or had a decrease in their functional status
- By one year that figure was 87%
- By one year only 1 in 8 patients had maintained their functional status from before dialysis
The discussion section of the article had a sentence that should be embroidered to every nephrologists white coat:
“...kidney failure may be a reflection of terminal multiorgan dysfunction rather than a primary cause of functional decline, and thus the initiation of dialysis may not rescue patients from an inevitable decline.”As nephrologists we need to elevate conservative, non-dialytic, therapy to be a clear option for patients, one that should be discussed along with peritoneal dialysis and transplant. Conservative care should not merely be a last resort when all other options have been exhausted.
I hope you will join us as we discuss the intersection of nephrology and palliative care this Wednesday at #hpm chat.
Dr. Joel Topf is a nephorologist who writes at Precious Body Fluids and is a leading social media ambassador in nephrology circles. You can find him on Twitter @kidney_boy.
What: #hpm chat on Twitter
When: Wed 3/4/2015 - 9p ET/ 6p PT
Host: Joel Topf Follow @kidney_boy
Facebook Event Listing: https://www.facebook.com/events/1413176172311690
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 nurph.com, for ease of following.
We will be posting the transcript and analytics here after the chat takes place. Chat Transcript and Chat Analytics courtesy of @Symplur
Monday, March 2, 2015 by Pallimed Editor ·
by Lyle Fettig, MD
Let me tell you about a palliative care colleague. His office is next to mine. If both of our doors are open, I can hear his phone conversations. Occasionally, I'll recognize when he's having a challenging conversation. My ears especially perk up when the challenging conversation is with a physician colleague. I cannot detect it by the volume, pitch, or tone of his voice. He varies all of those features as he would in normal conversation even though the topic is more tense.
Here's what I notice as I listen:
- He uses more open ended questions than usual, aiming to clarify the other doctor's position and concerns.
- He uses more silence. I can hear him patiently listening and never interrupting.
- I hear statements of appreciation for the role the other physician is playing in the patient's care and/or the relationship the physician has with the patient.
- When there are areas of disagreement, he makes clear statements of the intention which underlies his position. The intentions are almost uniformly statements that represent interests of the patient.
- When he makes suggestions, he doesn't represent them as a matter of doctrine.
Humble and Curious
The first adjective which comes to mind when I think of Atul Gawande is eloquent. The masterfully written Being Mortal would not have been possible without his eloquence. After reading the book, watching the Frontline episode, and now hearing him at the AAHPM Annual Assembly, humble and curious also rise to the forefront. Gawande recognized he could improve his own skill in approaching conversations with seriously ill patients. He sought out those who have expertise, namely his palliative care colleagues at Dana-Farber/Brigham and Women's Cancer Center. And he exercised his curiosity to learn.
During the Q/A at his plenary session, Gawande was asked:
"Do you ever get ANGRY at physicians who torture their dying patients? Sure they weren't "trained" in communication, but they are human."Gawande answered by reflecting on his own imperfection. (People in glass houses shouldn't throw stones.) He then framed the challenge that is before our field of hospice and palliative care:
"The most interesting problems are those in which good people do bad things."*Those physicians who do this poorly ARE only human, after all. Most (or should I say all?) grew up in a culture where death is the enemy, it's hard to talk about, and then went to medical schools where they were exposed to a hidden curriculum which reduced their capacity for empathy. We may feel angry when things go poorly and we can't fix it, but it's also important to make sure we're pointing our finger at the right problems. The "torturing physician" likely has inadequate skill or capacity to approach the situation fruitfully, and may lack the systematic infrastructure to make up for the inadequacy. We only see the end result of a culture and healthcare system not designed for proficiency in this area. The physician isn't a bad person- more likely quite the opposite.
Commandment #8 of the Ten Commandments for Effective Consultation is "Teach with Tact." When describing this commandment, the oft-cited original article mostly focuses on how to leave recommendations. The authors give solid advice about providing references of evidence to the primary physician in a timely manner. "The patient may quote the article to the primary physician....few physicians enjoy expanding their horizons in this matter." Part of our humanity is the desire to always fulfill our physician role as expert, even when we aren't always the expert.
We can hope that other physicians will naturally follow Gawande's lead and use their capacity for humility and curiosity to learn from our field. Make a list of those surgeons, oncologists, critical care specialists, hospitalists and others who exhibit these capacities. You may be surprised how long the list already is.
What about those that don't exude humility and curiosity? What about those times when we feel angry?
Bob Arnold provides the following wise advice:
"The learning point is how to listen respectfully, assume they know something about the patient, and be humble in my suggestions,” Arnold says. “We need to be as kind to our primary clients, the referring physicians, when they don’t do what we think they should, as we are toward patients and families who make different choices than we would. If I can ask myself why a smart, hard-working doctor would want to do things differently than I would, I can be a better advocate for the patient and help the doctor provide better care for that patient."We need to carefully consider how to teach with tact. We need to skillfully teach with humility and curiosity, gently guiding rather than brashly imparting. Remember what Chester Elton said during his Thursday plenary session as he quoted his father, "You be nice to everybody, because everybody is having a tough day." Empathy isn't just for our patients. Horizons won't expand through lambast and lecture.
My palliative care colleague probably sounds familiar to you. You hopefully have colleagues who exhibit the same humility, curiosity, and equanimity. And not just them. You too.
Look for opportunities to combine your expertise in palliative care, your desire to help others do better and humility that you can always learn new ways to teach others tactfully. My colleague recognizes this and has signed up for a VitalTalk Faculty Development course this spring. I've done this in the past and highly recommend it. The facilitation methods are grounded in humility and curiosity. Also, keep your eyes out for the work being done by Gawande, Susan Block, and others at Ariadne labs. It's exciting stuff.
I recently taught a communication course with a group of cardiology fellows using VitalTalk facilitation methods. One of the very skilled fellows in my group came up to me a the end of the course yearning for even more feedback than what she received throughout the two day course.
Atul Gawande's eloquence may not be matched by many but he is not the only one who is humble and curious. This brings me hope.
HT to Patrick Clary for helping me get this quote right via his Tweet.
by Lyle Fettig, MD ·
Saturday, February 28, 2015
As David Currow said when he received his Excellence in Research award, hospice and palliative medicine researchers need to meticulously measure toxicity in addition to benefits of palliative interventions. How do you think the State of the Science studies did with this goal? What do you think about the conclusions of each of the studies? Any changes in your practice? Thanks to the presenters Jay Horton, Kimberly Johnson,Nick Dionne-Odom, and Cardinale Smith for reviewing and presenting. Always a fun presentation.
Saturday, February 28, 2015 by Lyle Fettig, MD ·
Wednesday, February 25, 2015
By Katherine Sleeman
On Thursday 26th February from 9-10pm UK time (4pm New York, 8am 27th Sydney) we will be holding the monthly Twitter Journal Club for hospice and palliative medicine: #hpmjc. The aim of the journal club is to provide an informal multidisciplinary forum for discussion of latest research findings, and we hope you will join us. You can find some more information about the journal club here.
The paper for discussion this month is 'An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial’. The paper was published in December 2014 in The Lancet Respiratory Medicine, and is open access.
This month’s journal club will be led by Katherine Sleeman (@kesleeman), Clinical Lecturer at the Cicely Saunders Institute.
Why this paper?
Breathlessness is a common and distressing symptom in advanced diseases such as lung cancer, chronic obstructive pulmonary disease (COPD) and heart failure, and is often difficult to manage.
This paper reports the results of a randomised controlled trial of an early integrated breathlessness support service for patients with refractory breathlessness (breathlessness that persists once treatment of the underlying disease is optimised). The breathlessness support service was a multi-professional integrated service combining respiratory, physiotherapy, occupational therapy, and palliative care.
What did they find?
105 patients were randomly assigned over 2 years to receive either the breathlessness support service or usual care. The primary outcome was breathlessness mastery at 6 weeks after randomisation. The authors found that breathlessness mastery improved in the intervention group compared with the control group. Intriguingly, they also found that survival at 6 months was better in the breathlessness support service group than the control group.
Questions for discussion:
In your experience, is unrelieved breathlessness is a significant clinical problem?
What are the advantages of a fast track trial in palliative care?
What do you think of the primary endpoint of ‘breathlessness mastery’?
Are you surprised by the improved survival in the intervention arm? What might be the mechanism?
Are randomised controlled trials of palliative care that have patient survival as the primary endpoint needed?
We look forward to discussing this on 26 February, and hope that you can join us. Just follow @hpmjc and use #hpmJC on Twitter.
Wednesday, February 25, 2015 by Christian Sinclair ·
by Pallimed Editor ·
Tuesday, February 24, 2015
Ah, the problem I am constantly faced with! Whether aged or not, so many near-dying people are still waiting to make a plan. Still no closer now, in their eighties, to recognizing that the deep mystery of death is just around the corner, and they haven’t really talked about what they want, as they are dying- the where, what, how of it is not even considered. Where, if you ask most people, is in their home, what and how of it is usually wanting a quick and painless death, avoiding suffering as much as possible, with the ability to say goodbye, and I love you to family. Many have not completed an advanced directive or a POLST, and have hardly scratched the surface of a real conversation.
We are deluged with articles and reports about having “the conversation”, and the recent "Being Mortal" Frontline special highlighted, again, what those of us working in hospice and palliative care are experiencing almost daily. The conversations are difficult. They are fraught with emotions, awaiting the abyss of grief when patients and families realize truths of the disease progression. The spouse hears that it is time for hospice, and is overcome. Not a comfortable moment for the doctor, but she is able to quietly sit while the harsh truth sinks in. Yes, the patient has been dying, incrementally, but now in earnest. Time is of the essence for the patient and family. And the medical team must be human, not cloaked in the protection of white coats and emotional detachment. It is not the time to whitewash the conversation in vagueness or unrealistic expectations: honesty with compassion is needed. “When words are both true and kind, they can change our world” (Buddha).
We all were born with the disease of mortality. And yes, “there’s no natural moment to have these conversations except when a crisis comes, and that’s too late”(Gawande). But for a grandfather who is reaching the end of his life, it can be a defining moment to talk to his young grandson; that just as the animals in the farm die, the grass and trees in the field die, so in the web of life, we all are dying, and he will be dead, soon, too.
There are so many moments to grasp, if we are conscious of them, to sit quietly and share the experience of being mortal.
Amy Getter is a palliative care and hospice nurse who cares for patients with life limiting illnesses. She lives on the Oregon coast and is passionate about her family, being surrounded by natural beauty, and telling stories.http://hospicediary.com/
Tuesday, February 24, 2015 by Pallimed Editor ·
We have come a long way from 2009 when we first had a score of people live tweeting the Annual Assembly. Whether you are here in Philadelphia or back home keeping the service running while your peers are here, it is easier than ever to get interact with all the great people who care about our field.
If you are looking for just the highlights, look no further than Twitter. You do not even need to have a Twitter account to make good use of the hashtag #hpm15 (but it sure helps!). Just go to twitter.com and enter #hpm15 in the search box and you will find the top tweets, pictures and info about the meeting. If you ever feel you just don't get Twitter, go read Staci Mandrola's post from Monday about how she finally gets it, after 5 years of reluctance. This week is a great opportunity to see what the potential of Twitter as an organizing tool for disseminating goo information. And after the conference you can join us for #hpm chat on Wednesday nights!
This year we are trying an experiment which may appeal to those of you who are more Facebook friendly than Twitter terrific. If you go to the Pallimed Facebook page (which is a really fun place to be BTW), and click on Events you will find the AAHPM/HPNA Annual Assembly listed. Here you can post about a session you went to and in the comments below that post, you can start conversations with people who went to that session, or who are interested in the topic. If it becomes popular, we will take what we learn and share it with AAHPM and HPNA and think about doing this in the future officially.
Now some of you may be thinking this social media stuff is for the birds, yet you may be feverishly writing notes to bring back to your colleagues back home. If you do a write-up of the big lessons you learned, consider sharing it more broadly. We would love to see what you wrote and we may publish the best ones we see here on Pallimed!
And lastly, if you are in Philly, please consider coming to the Annual Pallimed/Geripal party Thursday night and meet some of the writers of the websites. It has always been a great night. If you see any of us during the Assembly, please come up and say hello and get your Pallimed sticker for your badge.
Christian Sinclair, MD, FAAHPM is a palliative care doctor at the University of Kansas, editor of Pallimed and a fan of Philly cheese steaks and hoagies.
by Christian Sinclair ·
Monday, February 23, 2015
I met Joe Rotella, the newly announced CMO of the American Academy of Hospice and Palliative Medicine, in the grocery store yesterday. We were both browsing the aisles, him for some crackers, me for some chicken broth. We stopped for a chat. He mentioned he just joined Twitter (@JRotellaAAHPM) and he’s following my husband John (@drjohnm) and me (@drstacim).
We talked about how Twitter is a whole new world for newbie 50-year-olds. How hard it is to type a URL into that little box and make it short rather than embarrassingly long. How no one cares what we think. What is a TweetDeck and how do I get one? What’s the difference between RT and MT?
John has been on Twitter for almost five years. He started with a postage stamp size following of less than one hundred people. He now has over 10,000 people that resonate with his message of common sense care for atrial fibrillation that includes a huge dose of Vitamin L (lifestyle), in addition to pharmacologic therapy and catheter ablation.
I’ve been on Twitter for 2 weeks and have my own postage stamp following. I have no illusions that the stamp will morph into a real country. It is a second full time job for John and he loves it. What I do hope is that it will lead to more virtual grocery store chats with really cool people who love palliative care.
This is a small sample of the people I’ve met in two weeks! Christian Sinclair (@ctsinclair) who is a tireless social media advocate for palliative care and editor of Pallimed blog. Nora Zamichow (@zamichow) who wrote about how her husband died of brain cancer and never heard the words “You are dying”. Lizzy Miles (@LizzyMiles_MSW) who taught me 10 things I need to do when I get diagnosed with a serious illness. Lyle Fettig (@lfettig) who taught me to examine my own feelings of blame when caring for a person with a devastating and unfair diagnosis. Laurie Becklund (@exlatimes) who died of metastatic breast cancer on February 8th and says:
Promise me, I told my friends and family, that you'll never say that I died after “fighting a courageous battle with breast cancer.” This tired, trite line dishonors the dead and the dying by suggesting that we, the victims, are responsible for our deaths or that the fight we were in was ever fair.I could go on about all the good stuff on Twitter. Next week is our annual American Academy of Hospice and Palliative Medicine and Hospice and Palliative Nurses Association meeting in Philadelphia. There will be thousands of the best, brightest, most committed, motivated, fearless palliative care people in the world at that meeting. And you are one of them! Join Twitter and join us at #HPM15 to get the word out about giving great care to people with serious illness.
You never know who you might chat with in the grocery store! Maybe the new CMO of AAHPM!
Staci Mandrola is a wife, mother, grandmother and palliative medicine physician who practices in Louisville, KY. Her husband John writes at Dr John M.
Monday, February 23, 2015 by Pallimed Editor ·
Friday, February 20, 2015
Lizzy Miles, MA, MSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can follow her on Twitter here.
Image credit: "PLAN AHEAd" by Christian Sinclair for Palilmed, may use with attribtuion
Friday, February 20, 2015 by Lizzy Miles ·
Wednesday, February 18, 2015
by Kristina Newport, MD
We’ve all heard the multiple reasons why folks are not interested in using opioids for their symptoms…
“They gave my sister morphine and she died the next day”
“He associates that medicine with the war”
“My neighbor’s cousin’s brother was addicted to that stuff”
Lately I have been struck by, not only patient specific stories, but local and national stories about opioids that lead to further stigmatization. One that really stood out recently was a story about a prisoner who survived for 2 hours after initiation of the lethal injection procedure. Of course, this raises issues regarding the death penalty etc., but what I’d like to point out is that the drugs utilized drugs were midazolam and hydromorphone. The exact same medications that I ordered this morning for a patient in our hospice unit for refractory symptoms. I cringed when I heard the broadcaster name drugs that have so many beneficial uses, knowing that some of our future patients will hear this story and be jaded by it.
Locally and nationally, opioid dependence is in the news regularly, declaring prescription opioid abuse at an all time high, with frequency of overdose deaths tripling in the past 25 years.
Our anecdotal patient stories are supported by numerous published studies revealing patients’ main concerns of:
- fear of tolerance/addiction
- perceived hastening of death
- impairment of cognitive functioning
- “I am going prescribe the same drugs that were used to intentionally kill someone in Arizona, but I’m definitely not trying to kill your loved one”
- “2.1 million other people are addicted to this medication, but don’t worry about that at all… you’ll die before that becomes a problem.”
We do need to keep in mind, however, that our reasoning does not always speak to what is most important to our patients. Sometimes the above issues are not just passing thoughts, but strongly held beliefs. It is our duty to understand these beliefs, just as we need to understand beliefs about other treatments/end of life preferences. And in some cases, it’s best not to use opioids. While we profess that our goal is to meet the person where they are, we are sometimes as guilty as other specialties- offering the tools that we know and love, even if it is not what the patient wants for him or herself.
So when we hear a line like “There’s no way that I’m taking that evil medicine”, it’s important to pause and ask, Why?
Kristina Newport MD (@kbnewport) practices Hospice and Palliative Medicine in Lancaster, PA where she also spends time running after her children, 4 and 6.
Morphine Roche, leaflet cover, 1937 by Atelier Levitt-Him
"MorphineAdvertisement1900 - no watermark" by Venturist. Licensed under PD-US via Wikipedia.
Wednesday, February 18, 2015 by Kristina Newport ·