Wednesday, April 15, 2015
I try very hard to mean what I say, say what I mean and make sure that my actions and my words are in sync. I don’t pretend that this makes me unique in any way – I believe that there are many of us out there every day trying to live by this philosophy. Sometimes when we follow this philosophy, we can get others talking.
Luckily, I was given the opportunity at Cleveland Clinic to take this philosophy to the masses on April 16th, National Healthcare Decisions Day. And I’ll bet you could do it at your institution too!
There has been an interest at my organization over the last few years to make sure that patients are getting the type of care which they are seeking. One of the results of this interest was the creation of a task force to look into advance directive completion.
Enter palliative care! We needed to provide healthcare professionals with the education to know what these documents are, why they are important and how to find them. So I was approached with two main asks:
- Get as many Cleveland Clinic caregivers educated about Advance Directives as possible
- Help people to see that Advance Directives are about planning ahead and not about Death and Dying
After years of seeing April 16th advertised on Pallimed as NHDD, I figured this would be the perfect date on which to host a campaign! This brings me back to that initial philosophy. We decided that the best way to start talking about Advance Directives at Cleveland Clinic was to lead by example. It made sense that our caregivers would seek more complete information on AD if we made it personal to them. And we felt that the best way to keep the message simple was to start with Health Care Power of Attorney documents. Our campaign on April 16th is to encourage Cleveland Clinic caregivers to fill out their own HCPOA. Who better than the people working in healthcare to realize that life tomorrow may look completely different from life today? We’ve raised awareness about the event– caregiver to caregiver - we’ve created an online module for enhanced learning and we have the next event planned in our minds.
What I’m hoping the readers of Pallimed will take away is that I only had to propose this idea one time! It was fully supported and embraced by the institution. To underscore how supported this campaign is, our Chief of Staff will be signing his document at the event! I spoke to a group of Clinical Nurse Specialists about the event and before I left the meeting, they were asking if I could send references on how to have the conversation with their HCPOA. The woman who designed the AD online module told me that she will be coming to the campaign because she absolutely wants to have her HCPOA signed and a group of individuals from our media department said they were discussing the importance of advance directives through their lunch break.
So what philosophy are you living by that you can bring to the masses? You may be surprised by the overwhelming support that your organization may have for you.
Don't forget to check out Pallimed's advocacy resource page for NHDD 2015!
Katie Neuendorf is a Palliative Care physician at Cleveland Clinic in Cleveland, Ohio. She spends a significant portion of her time in education, half of which is devoted to her role as the Medical Director for the Center for Excellence in Healthcare Communication and the other half in her role as an inpatient palliative consultant. Time away from work is happily spent with her husband and their 3 young kids enjoying the Cleveland Metroparks, playing all kinds of sports and repeatedly losing to a 4 and 6 year old at Connect 4.
Wednesday, April 15, 2015 by Pallimed Editor ·
OK, you have finished your taxes, and now it is time to turn your attention to National Healthcare Decisions Day (NHDD), April 16th! Hopefully you have been well prepared and working on your organizations plan for NHDD long before today. But just in case you have not prepared, we want to share some of our collected resources on advance care planning.
- Turning philosophy into action!
- Reclaiming Valentine's Day
- The Conversation: A Revolutionary Plan for End-of-Life Care
- Who will speak for superheroes when they get sick?
- 20 ways to discuss advance care planning with your family
- What do you do when the advance directive doesn't make sense?
- Surgeon-blogger posts her Five Wishes Online
by Christian Sinclair ·
Saturday, April 11, 2015
Being a hospice and palliative care provider is challenging, rewarding, and important. But is it safe?
I began to appreciate the answer while researching the topic to present in orientation. According to the National Institute for Occupational Safety and Health, and the Bureau of Labor Statistics, home health care workers face significant risks for serious illness, injury, and death.
Each risk deserves our attention. Let’s look at driving to and from the patients and families we visit, because automobile accidents are the leading cause of death in home health care workers.
Research conducted on behalf of the National Association for Home Care and Hospice (NAHC) found that in 2006 home care and hospice workers in the U.S. drove almost five billion miles to provide four hundred and twenty-eight million visits to nearly twelve million patients.
The study showed that here in the Commonwealth of Massachusetts (God save it!), home care and hospice workers drove 77,737,289 miles to conduct 13,182,930 visits – an average of 6 miles per visit in this geographically small but densely-populated state.
That’s about the same as 162 roundtrips to the moon, or 80% of the distance between the earth and sun.
Consider your own windshield time in the course of a normal day. Better yet, think about how you drive during those trips, and what other tasks you try to accomplish behind the wheel.
Work by David Strayer and colleagues at the University of Utah finds that driving while talking on a cell phone increases the risk of an accident at least four-fold, equivalent to the risk posed by drunk drivers.
What hospice clinician would even think about chugging a couple of beers between home visits?
The research also shows it makes no difference whether we hold our cell phones or use a ‘hands-free’ device. The problem has nothing to do with our hands, and everything to do with neuroscience. Driving a car is a complex cognitive task, even if most of us take it for granted. Our brains aren’t wired to do two such tasks at the same time. We can switch between them, but we can’t do both at the same time. In other words, multitasking is a myth.
More complex cell phone use like texting, checking email, or looking up a phone number poses an even greater hazard, because our attention is diverted for a sustained period. A lot can can happen in 130 feet - the distance we travel in just three seconds at only 30 miles per hour, a safe speed in a residential area.
3,328 people were killed in distracted driving crashes in 2012. That’s a number. Learn the reality of three deaths in the brief video here.
The National Safety Council (NSC) suggests four simple ways to increase driving safety:
1. wear your seat belt
2. drive sober
3. focus on the road
4. drive defensively
The NSC has also designated April as Distracted Driving Awareness Month, and has issued the Focused Driver Challenge.
I’ve taken the NSC pledge to drive cell-free. How about you? #CallsKill
We’re out there because we’re committed to helping patients and families live better lives in a difficult time. It’s frightening to contemplate how our actions behind the wheel could lead to sudden and traumatic loss for other families - perhaps even our own.
Jerry Soucy, RN, CHPN (jerry.soucy- at- gmail.com) has worked with patients and families facing end of life in critical care, hemodialysis, and hospice. He developed and presents “So you’re going to die…” an adult ed course on advance care planning and end of life inspired by an episode of The Simpson’s. He hopes to grow a 500-pound pumpkin this year.
More Helpful Links
distraction.gov - the United States Department of Transportation site for distracted driving
David J. Hanson, PhD is professor emeritus of Sociology at State University of New York, Potsdam. He has conducted research on alcohol use for over 40 years, and curates ‘Alcohol Problems and Solutions,’ an excellent web resource that includes this piece comparing the risks of driving while drunk to texting.
Car and Driver Magazine - Texting while driving: How dangerous is it?
Worksafe BC video
Myth Busters explores the question: Is talking on a cell phone while driving as dangerous as driving drunk? (30 second commercial at start)
David Strayer, ”Multitasking in the automobile,” the 2013 David Myers Distinguished Lecture on the Science and Craft of Teaching Psychology at the 25th annual convention of the Association for Psychological Science
Saturday, April 11, 2015 by Jerry ·
Thursday, April 2, 2015
Similar to the friendly political wagers among mayors and university presidents, I rang up a few colleagues to see if they were willing to offer small tokens of their local finest to each other. Surprisingly, when I suggested the losing side wear the other teams color to work, no one decided to take up that wager.
The first head to head competition is between John Mulder of the Michigan State University affiliated palliative care fellowship program in Grand Rapids, MI and James Tulsky and Arif Kamal from the Duke Center for Palliative Care. While MSU is a 7th seed, John has no doubt in the success of his team:
Mulder: If, by some miracle, MSU should happen to lose, I will have an assortment of offerings from our fair state. We may lose an occasional sporting event, but Grand Rapids remains Beer City, USA. The "Pure Michigan" basket will contain a selection of premium Michigan craft beers, including Bell's Oberon, the Short's Huma Lupa Licious, and Founder's KBS, a limited release which annually hits most of the "best beers in the world" list. We'll also include Vandermill Hard Cider, a bottle of exceptional Chateau Grand Traverse Riesling, a bottle of Cherry Whiskey from the Grand Traverse Distillery. In addition, I would offer up a jar of blueberry preserves, a signed photograph of a stunning Lake Michigan sunset, and an MSU stylish tee shirt will round out the stash. Please note that I've picked all of the high quality things that I enjoy, as I fully expect to retain possession of the goods. Good luck, y'all!
Tulsky and Kamal from Duke have a counter offer: A selection of specialty items and memorabilia from just a few of the extraordinary Durham spots highlighted in repeated New York Times travel reviews (here and here) of Durham, NC. (Can anyone imaginge spending 36 hours of vacation in East Lansing?) Not to be outdone by the other states whiskeys and bourbons, the package (in the heavily unlikely event that MSU should prevail) would include Barrister and Brewers Mystic Bourbon Liqueur. The winner will also receive Durham’s famous Q shack barbecue sauce, a Durham Bulls hat and a book on leadership by Coach K.
The other key match-up sees Jim Cleary from the University of Wisconsin -Madison Palliative Care program face-off against Todd Cote head of the Hospice of the Bluegrass Palliative Medicine Fellowship program (sponsored by the University of Kentucky College of Medicine).
Cleary offers a fine selection of Wisconsin beer and cheese, maybe a tweet from Aaron Rodgers, and a batch of Wisconsin's award winning Kinnickinnic Whiskey.
Cote counters with a friendly wager consisting of some of Kentucky’s finest Bourbons including Basil Hayden’s, Woodford Reserve and Lexington’s own, Town Branch. Since he can’t wager a thoroughbred racing horse he will wager a supply of box seat tickets to The Clubhouse during the Keeneland Horse Races. Suit and tie required!
The first two games are this Saturday April 4th. The winners will go on to meet in the championship game on Monday April 6th where the same items will be up for grabs. The winners will be very lucky regardless of who wins (or loses). These all sound fantastic. If you are interested in supporting your team of choice you could also consider donating to any of these four great programs. Might be a better use of your money then making a bet.
Thursday, April 2, 2015 by Christian Sinclair ·
Wednesday, April 1, 2015
by Abe R Feaulx, Pallimed Special Reporter
The rumors whispered around the globe have finally been confirmed. In the Fires of Pain and Suffering, A New Hero is Forged. Pain has a new nemesis; his name… is Palliman.
Upstart publisher MD Comics is taking aim at media giants DC and Marvel with its latest addition to the superhero world. Issue Number 1: An Empathic Hero Rises is the world’s first glimpse at a long-awaited transformation in the comic universe.
“He’s different from other heroes. He’s such a good listener!!” said 12 year-old Easton McKilkenny after finishing the first issue. “I wish I could do a family meeting like him!!”
This “Cloaked Crusader” is already changing the landscape of 21st century superheroes.
“The lone pain-fighting hero model is outdated; Palliman always works as part of his InterGalactic Interdisciplinary Team and all members offer their special skills,” said Kathy Konsbach, a global marketing representative for MD Comics.
Readers will come to love the colorful cast of characters in the Intergalactic IDT – including the resourceful robot social worker “Shield,” the contemplative “Captain Chaplain,” music therapist “Songstorm,” and a whole host of other equally important and mutually respectful team members. Gossip is already flying that the daring rogue acupuncturist “AcuPunk” may make an unconventional appearance in Issue 4.
This new look for a comic book hero is giving palliative professionals around the planet a renewed sense of identity and inspiration.
“It’s no secret that sometimes it’s hard for palliative providers to explain what we do. Now, Palliman will be there to inspire and educate a new generation. With his rugged cloak of symptom management and his empathically chiseled physique, he makes palliative medicine approachable yet spicy,” said Elaine Smotterman, palliative nurse practitioner.
However, education is only a small part of the secret sauce bringing this tasty hero to the plate of readers around the world. Fans say it’s the story that makes Palliman sizzle.
“The showdown at the end of the issue, where the Intergalactic IDT squares off against the evil Dark Warrior “Total Pain” on top of the Empire State Building was totally sick!” said 14 year-old Caitlin Grossbin, who has already decided she wants to be a Palliative provider when she grows up.
Even in the bleakest hour, an extra layer of support is now just a few pages away.
Happy April Fools 2015 from Pallimed!
Image: Palliman Comic cover by Nathan Gray, All Rights Reserved
Wednesday, April 1, 2015 by Abe R Feaulx ·
If you have ever had a sick patient under your care, you know how difficult it can be to address the most challenging and serious topics. Doctors aren’t always known for being the best communicators, and honestly learning how to speak with patients is not something that is stressed during any part of training. Luckily, there are communication courses aimed at clinicians to help bolster these much-needed skills. You may have heard of some of the more academic ones, but we have just learned of a new course you can take at home.
The course is called: "Clowning: a medical communications paradigm." It is taught by legendary clowning medical communications masters such as:
- Dr. Madja Guffaw
- Dr. Fin E. Bohn
- Dr. Hanna D Durnob
- Dr. Stan Notsit
You may be thinking to yourself, “Aren’t some people afraid of clowns?” Sure some people are, but many more people are afraid of dying, so using clowning techniques you may actually have an advantage in talking about the serious stuff!
Other important topics covered in the course:
- How to enter the room wearing shoes that don’t fit right
- Where to find fake flowers so you can enter the Bone Marrow Transplant unit
- Makeup colors that make your white coat POP!
- Why not to use liquid morphine in your squirting flower
by Abe R Feaulx ·
Monday, March 30, 2015
by Kevin Madden
“This child needs a tracheostomy before he can go home.”
It is a phrase I had heard – and probably had said – many times as an attending in the Pediatric Intensive Care Unit. This time, however, I heard a singular word – need – in a completely different way. Many thoughts went through my mind:
- Why does a child “need” anything?
- Who determines what a child “needs”?
- How many times had I delivered care to a child based on what I thought the child “needed” without ever knowing whether the child and family thought they “needed” the same thing?
I’ve discovered an incredibly vibrant community of like-minded individuals committed to helping children and their families navigate their way through unthinkable circumstances. As Pediatric Palliative Care is a relatively new specialty, people bring skills and experiences from many different fields of expertise to the table – general pediatricians, social workers, pediatric oncologists, pediatric nurse practitioners, NICU physicians, pharmacists, PICU physicians, chaplains and on and on… To me, it is the collective collaboration that makes our work so interesting, fascinating and satisfying.
With that collective mentality in mind, I am excited to see the #pedpc community come together and continue the invaluable exchange of ideas in the Twittersphere in a #hpm Tweetchat dedicated to Pediatrics, this Wednesday April 1st at 9 p.m. EST! (Not an April Fool's joke!)
Kevin Madden, MD is a Palliative Care physician at M.D. Anderson Cancer Center in Houston, TX where he specializes in Pediatric Palliative Care. In his former life he was a Pediatric Critical Care physician at Children's Hospital Los Angeles. He enjoys riding bikes, skiing, traveling and playing all sorts of sports with his family.
What: #hpm chat on Twitter
When: Wed 3/4/2015 - 9p ET/ 6p PT
Host: Kevin Madden Follow @madden_kevin
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 30, 2015 by Pallimed Editor ·
A strong, active man in his sixties, he had been struggling and fighting for months—in and out of the hospital experiencing chemotherapy, radiation, and a long-term-care stay. He was suffering from cancer, pneumonia, and multi-system failure. He was my father-in-law and he would live for hours, or a few days.
We knew his end-of-life wishes from the Advanced Directive and Living Will he had signed. So we were shocked when his primary care physician said, “If you three sisters agree, I’ll do everything I can.” It seemed that she was ignoring my father-in-law’s decisions and dropping all of the guilt and indecision back on the patient’s daughters. Confused and bewildered they agreed to a family meeting. A different physician attended. “There is nothing more to do,” he explained gently. “No other treatment will extend or improve his quality of life.” His suggestion: turn off the machines and use comfort measures.
My father-in-law spent the next hour surrounded by family. He never regained consciousness. With his hands being held, in a comfortable, quiet, peaceful, loving environment, he died. I have nothing but admiration and affection for these doctors. I know each was suggesting what he or she thought was the best treatment option. But why was it so hard for the primary care physician to give the news to our family? Why did the news from the second physician seem to be such a shock for us? End-of-life discussions are so difficult, but also so necessary.
PBS’s recent documentary, “Being Mortal,” opens the window into the often excruciating choices that doctors need to make. Tell a 34-year-old mother with stage four lung cancer to forego chemotherapy so she can hold her newborn? In his best-selling book of the same name, Dr. Atul Gawande bravely admits that he would have talked differently with this patient and many others. But, he says, for doctors, conceding that a patient might be better off stopping curative treatment is declaring defeat.
It’s no wonder. Doctors are trained to keep people alive. But Gawande is helping change the conversation about death and dying in America. It’s not just about mortality. It’s not just about living longer. It’s about understanding patients’ wishes. It’s about living better.
Today is National Doctor’s Day. Established in 1991 by President George H. W. Bush, it’s a day to recognize the sacrifice of the men and women who carry on the quiet work of healing. It’s also a day to recognize the heavy emotional burden that doctors carry, and the struggle many of them face talking about mortality. It takes a strong dose of understanding and a great deal of courage to shift the conversation from treatment to other options, especially when physicians sense the patient isn’t ready. In fact, according to the Institute of Medicine’s recent Dying in America report, one out of four adults has given little or no thought to end-of-life wishes. Fewer have communicated their wishes in writing or through conversation. Doctors are picking up on our reluctance to admit that we’re not going to live forever.
Ironically, other research shows that both consumers and physicians would like to talk sooner rather than later. In our comprehensive Hospice Care survey of consumers and physicians across America, Crossroads Hospice found that one out of three doctors and patients say they’d like to have the hospice conversation at the time of diagnosis or the start of treatment. Yet only one out of five physicians we surveyed actually starts the conversation then.
Doctors are totally human. Doctors are optimistic. Doctors are relentless in their search for answers. Understandably, many doctors are reluctant to discuss hospice because they feel they are giving up on a patient. But hospice isn’t about giving up hope. It’s about creating hope-filled experiences for the patient at the end of life’s journey.
Today is a day to thank Dr. Gawande and other physicians who are advocating for earlier end-of-life conversations between doctors and patients. It’s a day to thank doctors for their willingness to speak to patients with compassion and honesty about their options. And it’s a day for all of us to remember to share your hopes, your fears, and yes, your end-of-life wishes with those you love and love you back.
Perry Farmer is the President and Co-Founder of Crossroads Hospice, the fifth-largest hospice company in the United States. This piece was simultaneously published here and the Philadelphia Inquirer.
by Pallimed Editor ·
Sunday, March 29, 2015
In a recent #hpm chat, we touched on the topic of “redesigning death”. The discussion moved to finding ways to insert hospice and palliative medicine into everyday life, moving away from medicalizing death to humanizing it, or re-humanizing it. Atul Gawande framed it very well in his recent speech at the AAHPM Assembly with one simple statement in regards to dietary restrictions: “Let ‘em have the damn cookie.” And again, at the Institute of Medicine conference on March 20th, Atul Gawande, touched upon emotions and desires that change for people as they grow older. Hopes and goals shift from a medical focus to desires related to being with certain people and enjoying simple experiences. The anticipation that well-being is possible even under difficulties of disability by putting the focus back on the person, no longer on the disease or treatment, and the life the person wants to live. Watch Gawande's full keynote address from the IOM below.
In keeping with that theme, a number of participants in the #hpm chat had suggestions about re-framing the perspective of the hospice and palliative medicine practitioner so that they can embrace “patient centered care” in line with what the patient wants. Here are a few:
What if people put the same enthusiasm into orchestrating the end of their lives that they put into proms and weddings and graduations? #hpm
— Joe Rotella (@JRotellaAAHPM) March 26, 2015
@JRotellaAAHPM @skipbidder Aspirations, accomplishments, legacy-building and meaning-making. so important. #hpm
— Beth Fahlberg (@bethfahlberg) March 26, 2015
@bethfahlberg @skipbidder @JRotellaAAHPM Agreed. But if I redesigned death, I would target aspirations more than suffering #hpm
— Joe Rotella (@JRotellaAAHPM) March 26, 2015
was at ALF, ExecDir starting broad coalition for making Washington County a dementia friendly community. EOL friendly not so catchy.. #hpmAnd at the close of the chat Joe Rotella (@jrotellaAAHPM) wondered what the Most Interesting Man in the World’s take on dying would be. So here are a few thoughts, just for fun! Feel free to tweet your highly entertaining “interesting man in the world thoughts on dying” using the hashtag #InterestingEoL and share it on your social media platform of choice.
— Shelly Johnsen (@drshelj) March 26, 2015
1. When he dies, he lives to tell you about it.
2. He gave his father “the talk”, and his father gave it back.
3. His memorial starts 6 months before his death, so he can enjoy the accolades.
4. Instead of the grim reaper following him, he is following the grim reaper.
5. His tears can alleviate suffering, but he never cries.
6. He is the life of the party at his own funeral.
7. He once enrolled with hospice just for fun.
8. If you have a peaceful death, it’s because he let you.
9. He can speak palliative lingo in cardiology terms.
10. His DNR order smells like cologne.
Niamh van Meines is a Hospice and Palliative Care Consultant and Nurse Practitioner at Practitioner Solutions. She assists hospice and palliative care organizations with program development, quality improvement and clinical education. For fun, she likes to hang out with 2 energetic beagles, listen to world music, and explore beaches & national parks with her family.
Join us Wednesday nights for #hpm chat at 9p ET on Twitter.
If you would like to make your quote into an image you can use a meme generator like imgflip.com.
Sunday, March 29, 2015 by Niamh van Meines ·
Thursday, March 26, 2015
Certain things are just universal. All humans need nutrition. All humans need hydration. All humans need air. There really is no argument to these basic needs for existence. Once our physical needs are met, the priority becomes filling our emotional needs. At the heart of our emotional needs is the desire to feel safe and secure. As children, we are taught that a key way to feel safe and secure is through the approval of our parents, and as we age, we become conditioned to seek out approval of others as well.
The degree of power to which we give others approval of us varies widely and is based on things such as personality, upbringing, and life experiences. One thing there is no need to debate, approval of others feels good and is validating.
We know that approval is tied in to safety and security, so you can imagine during the end of life, if a person isn’t feeling safe and secure, they will seek out approval even more. The ways someone seeks approval can be subtle or direct. Some take medications they don’t want in an effort to get the approval of their doctor or family members. Others get out of bed when they don’t feel like it, or eat a few bites of a meal despite having no appetite. I see patients entertain guests when they’d rather be sleeping, still seeking the approval of others.
Other times approval seeking comes with stories from the past as people use the narrative of their lives to gain validation. Amazingly, some even prolong their dying as a means of gaining the approval of family members who don’t want them to die.
Since approval is a universal emotional need, a helpful thing family and friends can give at the end of life is the gift of approval. The easiest way to think about how to give approval is to give permission. Permission removes any guilt associated with seeking approval and fear of disappointing those we love. Give someone the permission to be tired, to not eat, to be worried, to be angry, to refuse treatment, to feel sad, or ultimately to die.
It’s not just the patient that needs permission during end of life situations. Caregivers and family members need permission as well. They too are seeking approval in an insecure and unsafe reality. One of the greatest areas caregivers need permission is in letting go of the caregiving to step back into the role of spouse/child/friend. It is impossible to provide both total physical care as well as emotional care towards the end of life. Society unfortunately gives approval to the more tangible physical care, despite the more important value that comes with emotional care that only family and loved ones can provide. Often it takes a hospice team to grant that permission.
Just like with patients, we can be responsible for granting approval to caregivers and loved ones. By giving them permission to be where they are, whether angry, sad, worried, not wanting to say goodbye or hoping it was all over.
Permission is a simple way to give approval with untold benefits for those around us.
Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune. It is re-published here with the author's permission under a Creative Commons license.
Thursday, March 26, 2015 by Amy Clarkson ·