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by Holly Yang, MD

I try to greet each new year by jumping into the ocean and catching a wave. If I'm good about it (and not on call) I try to meet the dawn of the new year in a special kind of hello and thank you. So... I guess it's a good time to highlight a bit of surf culture. Why surfing?  Well, because it is an integral part of who I am, but also because it illustrates beautifully how different ideas of culture impact how we see life and death, and celebrate who we are and were.

Culture is a funny word, and is probably overused.  We tend to view it through the eyes of ethnicity, nationality, or faith, but we each exist in many types of communities each with their own cultures. As you think of your own life, you can probably identify which communities are the ones that are most important to you, which "culture" has the most meaning and helps you define who you are at your core.  Isn't this where we find the stuff in the top three layers of Maslow's?  Isn't that what gives us meaning and purpose?  Isn't this some of what is lost when we find some our patients in the deepest throes of existential suffering?

So how does this connect to surfing?  Well, I can connect most anything to surfing...

"A wave does not need to die to become water. She is already water."

- Thich Nhat Hanh

Surfers are a funny bunch.  It includes people of all educational backgrounds and socioeconomic levels, young and old, male and female.  We are linked by our fierce passion for the ocean, and we know we are a part of something mysterious, awesome, and greater than ourselves.  You only have to sit atop your board at sunset with dolphins playing in front of you, or paddle like hell to get over the huge wave about to break on your head to know that truth deep in your core.  If you practice medicine near a body of water with waves (this includes the Great Lakes too!), you will probably have a surfer for a patient.  Ask about hobbies in your social history.  Know that one of their most profound connections is to that deep blue mystery.  Rell Sunn, known as the Queen of Makaha, exemplified this when she continued to surf despite being hospitalized and getting chemotherapy for her breast cancer.

When a respected members of our tribe dies, we mourn their loss and celebrate their life by having a paddle out.  The Irish have wakes, people in New Orleans have jazz funerals and second line parades, surfers have paddle outs.  The tradition is thought to have originated in Hawaii in the early 1900's and moved to the U.S. mainland and around the world since that time.


Paddle outs can be done as a memorial or a celebration of life, with less or more of the spiritual components.  Most paddle outs are more humble affairs, but all include family, friends, and members of the local surfing community.  There are pictures, food, flowers, not so different from other types of remembrance ceremonies. Some are big affairs as you can see in the videos from the paddle outs for pro-surfer Andy Irons in 2010, or Newport Beach lifeguard Ben Carlson who died in 2014 while in the line of duty. Some are done more than once, the most famous is done annually for the opening ceremony of the Eddie Aikau memorial surf competition held by Quiksilver. UCSB surf club hosted a paddle out for their classmates who were killed in 2014 in Isla Vista. Junior Seau, the NFL player, had a paddle out after his death in 2012. It happens more than you are aware of, but if you have a chance to be a part of one, go. It's a beautiful experience.

In a more traditional version of a Hawaiian paddle out, a Hawaiian Kahuna or Ku'puna stands on the beach in the water with the family and calls in the person's spirit with prayer, and an Alaka'i blows a conch shell which has been blessed in the ocean. Ocean water is brought in a bowl and the family, close friends, and the ashes are blessed by the Kahuna or Ku'puna with wet tea leaves. As the tea leaves touch those close to the deceased, it is a way of passing on the person's mana, or spiritual power. The family publicly thanks the gathered community, prayers are said, and the conch shell is blown again calling out to the spirits. The ashes are wrapped in the tea leaves with the sinking stone, and the people who are going to be paddling out stand on the beach facing the surf and hit their surfboards to make noise as the Kahuna or Ku'puna chants a warrior chant. Next, everyone paddles out on their surfboards (often family is in a boat), and form a circle with the family in the center.  People hold hands, say prayers, and tell stories about the person who has died. The ashes are placed into the water, the flowers and leis are thrown into the center of the circle, and people cheer and splash the water to celebrate the person who has died. Finally, people catch a wave in to shore carried along, surfing, with that person's spirit.

The first paddle out I went to, was for a long-time local surfer whose last name I didn't know until he died of a heart attack on the beach. He was a kind man, who gave me a few gruff pointers when I first started surfing, and yelled, "Paddle!" at me when the wave came. You have to understand that most people either avoid you or grumble at you when you are first starting to surf, so his help was very much appreciated. It was moving for me to witness the powerful ceremony, to be a part of celebrating him and remembering his life.  I learned he was a lifeguard who taught others how to save lives, and it seemed like everyone I'd ever seen in the ocean was in that floating circle. I cheered and splashed, and threw my flowers into the water. As I caught a wave in, I said a little prayer of thanks for Davey's life and for the community that gathered to celebrate it that day, and I felt gratitude for his presence.

Paddle outs are a part of who we are as surfers, a part of our culture. I know there are lots of communities of all types that celebrate people's lives and deaths in unique and interesting, yet sacred ways. I hope to continue to learn from my colleagues and patients these cherished bits of culture that make us all part of a fascinating human story. Hopefully we can get a few more "culture" posts highlighting some of these as we go along. If there are particular ones that pique your interest, let us know and we'll try to shed some light on them. Wishing you all a wonderful next chapter in this adventure called life in 2015!

Special thanks to Kai Buanoi and Unko Mo for helping me with this post.

Image credit: Illustration by Christian Sinclair for Pallimed, original photo "One on One" by Bryce Bradford , shared under Creative Commons CC BY-NC-SA 2.0
Photo credit: Sunset Wave by Holly Yang, used with permission, All rights reserved

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by Emily Riegel, MD

My darling,
Some time ago you and I had a crazy idea that it could be the two of us against the world. In our naiveté we thought we had a connection previously unknown to any other human couple. We, in our love, became a superior being that transcended the “you” and the “I.” We agreed that Pablo Neruda’s Sonnet XVII was written about us.

Of course, between then and now, life has happened, just as it happens for all couples.

Our days are busy with children and meetings and work and parents and meals and errands and sick cats and lost keys, and sometimes in the routine of chaos we can say, “How are you? How was your day?”

And I say, “Fine. Yours?”
Sometimes that is true, it was fine.
Sometimes I say, “Really rough.”
Sometimes I say, “It was a crazy day.”
Sometimes I say, “I just can’t even talk about it.”

Yet, even as I have tried to give you a glimpse of the days, there is no way for you to join me in my sadness or frustration or mystified joy.

As we close out another year together, I am going to be honest now, as I should have been all along.

Before I say this, know that my intention is not to make you think my work is superior to yours, or more important, or more difficult, or more valuable.

You see, though, my work IS incredibly hard, and important, and difficult, and valuable.

In one day’s time I see humanity at it’s very best and it’s very worst as I hold another person’s hand while they walk the tight rope between life and death.

I get yelled at and blamed and accused of not caring, but I can’t argue back because I know that I am just the easy target for the anger and grief.
I watch people take their last breaths.

Before those last breaths are taken, though, I get to talk to people about what truly matters to them. We talk about life and death and what it means to live while dying.

I witness lives changing forever.

These are the day’s events that might seem easy to come home and talk to you about, but there are many reasons that I can’t be fully open about it.

Some of these need to be processed in my own mind and heart before I can put them into words to share with you. I need time to wrap my mind around them before I can ask you to wrap yours around it as well.

There are also some that, my dear one, would break your heart. I know you so well, and I know how much you love your family and how terrifying the idea of losing any of them is to you. You are so protective of us whom you love, and if I don’t want you to be fraught with anxiety and fear every time one of us leaves your sight. I choose to protect you from the sadness of the world.

More often, though, I am being selfish of my stories. I want to hold my days close to me and be able to cherish what I have seen or heard or felt. Retelling the story, or trying to capture the it in words is inadequate. It fails the beauty and mystery I’ve been a part of. It’s like catching fireflies, and thinking they are going to flicker in the jar on your nightstand all night long. Instead they give up their blinking and by morning are scattered among the blades of grass, dried and shrunken. I want to give you the fireflies as they are under the oak tree at dusk, not as the shriveled remnants of the beauty. Trying to capture and give you the view of the day when I know I can only possibly give you the tiniest glimpse feels shallow and disloyal to my patients and my colleagues.

I know that you don’t understand what I do or why I do it. I know that you appreciate and admire what I do, though, and for that I thank you.

I thank you for letting me cry when it is the only thing way I have of explaining my day.

I thank you for giving me space when I need it.

I thank you for not rolling your eyes when I insist on cramming in every bit of magic around the holidays because we must make every memory and every moment matter.

I thank you for declaring that if all patients had a palliative care doctor that the American medical system would be fixed.

I am sorry for the times I am emotionally out of reach from you and my mind is still at work, or with a patient or family. I am sorry for the times that I am not handling my stress well and I take it out on you.

When you ask me, “how was your day,” you should know that even with all the stress and chaos and hard work and lost keys, that my day, always, was great. It was wonderful and magic and a gift to be able to spend it doing the work that I love, or with the people that I love, or seeing a beautiful sunset. So I feel guilty when I am frustrated that the kid lost his backpack, or some other minor inconvenience that I get to experience because I am alive and healthy. This is part of the dichotomy of living with me.

Thank you, love, for your patience.

As we go into this new year, remember “I love you like this because I don't know any other way to love.”

Always,

ELR

Emily Riegel, MD is a palliative care physician at the University of Kansas Medical Center, where she sees both children and adults.

Photo Credit: WesDigital via Compfight cc

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

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss their wish lists for additional research to support their respective social work practices. This article is the second article in a series of planned joint conversations into these populations. (See post #1 here)

Where are the gaps in the literature for social workers?

Allie: Although there is some great writing out there in the field of hospice and palliative care (HPC) social work (The Journal of Social Work in Palliative and End of Life Care, for example), there are still large gaps that exist in the HPC social work literature. First off, there is very little in the way of research on measurable outcomes in psychosocial palliative and hospice care specifically. There is research into this work with specific illnesses (i.e. cancer), or in grief work, but there is still a long way to go in proving that what social workers do with their patients has a positive impact.

Along these lines, there is a lack of information about specific interventions or methods that we can use in addressing psychosocial issues in hospice and palliative care. For example, an article might discuss a theory (such as Family Systems) and/or an approach (maybe Cognitive Behavioral Therapy – CBT), but what still needs to be written is what CBT techniques need to be applied and how these apply theory to practice.

In the coming years, I hope to see more written about specific tools that social workers, especially those new to the field, can use in their practices.

Lizzy: I agree wholeheartedly. In school, we talked a lot about bridging research and practice, but I believe the research side needs to help build the bridge a little more. There are many more practical resources and interventions available for bereavement in the research than for the dying process.

I have a wish list of common hospice situations where I would like more ideas for interventions. In these situations basic social work techniques apply, but I would love for someone to tackle the topics directly and offer techniques or tools specifically addressing these challenges.

• Hospice patients with dementia who have an apparent trauma history
• Reluctant caregivers (especially adult children who feel forced into the role)
• When it’s too late for patient to get POA (i.e. patient has dementia) and the natural caregiver is not the legal next of kin

Research Inspired Practice

We would be remiss to have an article about the gaps in the literature without acknowledging our favorite pieces.

Allie: My general approach to working with the anticipatory grief and the grief for the losses that our families face through the illness process often ties into the Dual Process Model of Coping with Bereavement (DPM) initially introduced by Margaret Strobe and Henk Schut. Although there are many articles that describe this model, the journal Omega put out a 2010 issue re-examining this model after a decade of publication, including research into effectiveness of interventions that utilize DPM.

The DPM operates on the principle that adaptive coping involves both confronting the reality of a loss, accepting it as it were, and participating in “restoration-oriented” tasks. They noted that those who seemed to have the least mal-adaptive coping strategies seemed to oscillate back and forth between the loss-oriented tasks (such as grief work) and the restoration-oriented tasks of adapting to a new normal. Although the authors point out that this is not a universal way of grieving that all should participate in, what I like about it is that it takes into account that people can be in many different places all at the same time. I also like the idea of creating a new baseline for life that has room for the person (or skill) that is lost. Similar to Dennis Klass and Tony Walter’s idea of Continuing Bonds, the DPM allows room for the who or what that is lost to still be a part of the griever’s life, just in a new way. However, unlike Continuing Bonds, it also allows for space in the griever’s life without the loss.

Lizzy: The research that I use most often in my day to day work is Harvey Chochinov’s research on Dignity Therapy. Not to be confused with the “death with dignity” physician assisted suicide (PAS) movement, Dignity Therapy is a series of interventions designed to relieve existential distress at end of life. Dignity Therapy starts with one basic Patient Dignity Question (PDQ), “What do I need to know about you as a person to give you the best care possible?". I ask that question at every hospice admission I do. This question can help identify patient stressors. Now I must admit, sometimes the patient responses are unexpected. “I like basketball,” for example.

Beyond the initial question, there is a short Patient Dignity Inventory (PDI) that helps to identify twenty different ways that a patient might experience existential distress, from illness related concerns to role preservation. The research provides further exploratory questions such as "What things did you do before you were sick that were most important to you?" that can be asked of the patient and then suggests multiple interventions for each concern.

Hospice and palliative care researchers who want practitioners to apply their research would do well to model the resources that Chochinov’s research provides practitioners.

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

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

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by Beth Budinger Fahlberg PhD, RN, CHPN

A physician, when asked how he wants to live at the end-of-life, states “I want to die in my own bed in my bedroom, holding my wife.” Yet how do most Americans die? In a hospital room after prolonged multi-system health issues, with a seemingly endless series of hospitalizations, procedures, tests, treatments and medications, and self-care regimens.

This discrepancy between the “ideal” view of death and the reality of death in America today is the challenge explored in the new award-winning documentary, Consider the Conversation 2: Stories about Cure, Relief, and Comfort. This is the second film by Michael Bernhagen and Terry Kaldhusdal, who produced Consider the Conversation: A Documentary on a Taboo Subject in 2011.

Over the course of Consider the Conversation 2 (CTC2), we learn from physicians and patients about the importance of communication in navigating the uncertainties and the many decisions associated with chronic serious illness. Palliative care and communication are forefront in this movie, which includes interviews with Palliative Medicine experts including Diane Meier, James Tulsky, Anthony Galanos and Jim Cleary.

While the perspectives and information provided by these medical experts is a critical element of this film, the most powerful messages about communication come from the patients themselves:

• Laura, whose journey through cancer treatment is prompting her to take care of things for her loved ones. She talks about cleaning out her basement and writing a note for her family: “Hopefully you will find this when I’m 94. But if not….” For Laura, statistics about her disease provide her with hope, and the motivation to achieve her goal of “being an old damn lady.”
• George, a federal highway administrator with lung cancer who is famous for his giant pumpkins. He faces his journey one day at a time. He didn’t want to look at the mortality tables for his disease, as he views himself as an individual, not a statistic. He just wants to know if something changes, but he doesn’t want the details.
• Greg, a younger man with advanced cancer who doesn’t want to know anything about his disease. This is illustrated as his wife talks about how he had to look away when they were completing the disability claim form question “what do you have”. We see this couple at an advanced stage in Greg’s journey, just a week or two before his death. One of the most touching scenes in the movie is when he is talking with his two young daughters over the phone, sharing “magic kisses” with each other.

Each of these people has a unique way of thinking about their diagnosis and their future, and of coping. We see how their physician, Dr. Toby Campbell, at the University of Wisconsin, tailors how and what he communicates, based on what he knows about them, and what they want to know. The film concludes with a story by Robert Fulghum, from his classic book All I Really Need to Know I Learned in Kindergarten. Seeing this iconic storyteller is both a rare treat and a powerful reminder of the importance of relationships in advanced illness.



With the release of this film, a big-screen premiere was recently held at the Oconomowoc Arts Center, near Milwaukee. The highlight of this event was a panel discussion that included several people who were featured in the film. George was there. He is still growing big pumpkins, and going through more treatments, living one day at a time. Greg’s wife was also there, eloquently sharing about her husband and their experience, using these types of speaking opportunities to help her heal and move forward. Toby Campbell shared his perspectives on the film and on communication, while Jim Cleary challenged us to consider the language we use when communicating with patients. Do we use words of war, such as “fight” and “battle”? Or, do we use words that can instill more peace in our patients, such as “journey” during the ups and downs of serious illness? It was a memorable evening to celebrate a remarkable film.

So how can YOU see Consider the Conversation 2 and share it with others, to get the conversation going in your area?

CTC2 is being aired on PBS stations across the US. You can also purchase the DVD through Amazon via the CTC website. The DVD pricing is $30 for personal use, $200 for educational use.

Beth Fahlberg is a nursing educator, researcher, and author interested in palliative care in heart failure and evidence-based, innovative teaching and learning approaches. She enjoys spending time with her daughter and husband, and her three guinea pigs, at their home in Madison and their family's lakefront cottage in northern Wisconsin.

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When I was in college, I had the opportunity to work with Mother Teresa at the Home for the Dying and Destitute in Calcutta, India. The mission of the sisters was simple; love the least of these. Specifically they did this by bringing in the unwanted and abandoned at the end of life, and giving them a bed, meals if they could eat, and a place to die in the company of another.

The home was sparse by anyone’s account; an open room with a slab concrete floor lined with mats placed on the concrete 3 feet apart. The medications available were even sparser, the only real means of eliminating pain being the ability to hold someone’s hand or give a novice massage. Despite the paltry means of the place, the patients’ eyes shown with immense joy. I soon learned that the medicine we dispensed that had this powerful effect was respect.

Respect is admiration earned by abilities, achievements, or qualities. Interestingly, even with great achievements, etc. respect is not guaranteed, but is completely in the hands of the beholder. The same is inversely true; respect can be given to someone who does not deserve it.

This ability of an individual to grant or retract respect makes it all the more powerful. In Calcutta, the act of lifting someone literally from the gutter and bringing them into a shelter with a bed and food was enough to communicate respect for their person hood. How, though, do we do that here? What tangible ways can we grant respect to someone at the end of their life?

There are a plethora of ideas that come to mind; from simple things like making eye contact and listening to being attentive to personal care needs like bathing and shaving. Really though, any action you may offer depends on the concept behind respect. Respect first and foremost understands a person’s needs and prioritizes those.

In fact, the actual effort to understand what that person really needs or wants is in itself an act of respect. For example, for one patient the respectful thing to do may be to sit for an hour and visit, reminiscing on times gone by. For another, however, the respectful thing to do might be to leave, allowing them time to rest.

Respect says “I care about you enough to understand what you need and grant it, despite my own feelings.”

There is no time more difficult to show respect than over actual end of life decisions. One of the most profound ways to respect someone is by finding out how they want to die, and honoring that. If someone voices the desire to be done with medical interventions, even if those interventions can prolong their life, the respectful thing to do is not to talk the person into your views, but at that point to allow a natural death.

Respect then is many things; meeting physical needs, being kind and caring, trying to understand where someone is coming from, and ultimately honoring their decisions. You’d be amazed to find that when we grant this gift, even to the undeserving, it can be more powerful than medication.

Source: Google books Ngram Viewer

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.

Image credit: Google search

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by Holly Yang, MD

Dear HPM colleagues,

For those of you who celebrate Christmas (and for those of you who are waiting patiently for the after Christmas sales), you'll be happy to know that there is still a chance to ask your friends and relatives for a gift, one they can get online without going to that crazy mall or fighting through traffic. Heck, give the present to yourself!

Ask CMS to pay providers for having advance care planning conversations. There are codes now (yay!), just no reimbursement (insert frowny emoji here).  BUT... the comment period to CMS is open until Dec. 30th, so if you are a procrastinator, not to worry. You still have time!

Ask your non-HPM friends to do it. It matters to them too! Do you think a primary care doc can fit in an ACP conversation into a 10-15 min. visit for their patient scheduled for another problem? Or an annual exam where they are supposed to do a full H and P, counsel against smoking, promote healthy eating, exercise, ask about gun safety, screen for domestic violence, and catch up with major events in a patient's life? What about the specialist who also has to fit it into a busy clinic day packed to the brim with scheduled and urgent, unscheduled visits? We love our patients. It's just that often it doesn't come to the forefront of conversation until it becomes an urgent issue or a true crisis. We need to have these conversations valued as "separately and identifiably" necessary part of providing high-quality, patient-centered care.

Besides, commenting isn't just good for our patients... all the cool kids are doing it. AAHPM, CAPC and AGS submitted. Paul Tatum, Kyle Edmonds, Laura Petrillo, and Alex Smith did too. Lots of people did. Patients, doctors, lawyers, academies, associations... you can too!

For those who like info short and sweet, I've already annoyed you. Quit reading and go here.
Push Ctrl-F on a PC (Command-F on a Mac) and search "99497" or "99498" to read what CMS is currently planning to do.

At the very top of the webpage click the "Submit a Formal Comment" button.

For the detail people, please see the HPM blog trifecta on the subject by my esteemed colleagues Gregg VandeKieft, Paul Tatum, and Phil Rodgers, which are very rich resources:
AAHPM
Geripal
Pallimed

For those who are more politically motivated or feeling a bit cranky from all the relatives in your house and need a way to vent, read Laura's Geripal post here.

Your opinion matters. It really, really does. CMS is listening (until Dec. 30th, that is...) No complaining that you don't get reimbursed for having advance care planning conversations if you don't avail yourself of this opportunity. Just think... wouldn't it be awesome to have one less barrier to patient-centered care?

It's Christmas Eve! The Elf on the Shelf is watching you to see if you are naughty or nice...

Photo credit: Alan Dow (used with permission)

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(Note: we have a short poll about your thoughts on this show. It doesn't matter if you have seen it or not. Let us know what you think - Ed.)


by Chris Okon

"Getting On" is an HBO series about the daily and often absurd experiences of nurses, doctors, attendants, and patients in the "Billy Barnes" extended care wing of the fictional Mt. Palms hospital in southern California. ​Some viewers may be offended by the gallows humor that threads through each scenario, and so viewer discretion is advised. For others who don't mind, and in fact appreciate, the dark humor that's possible with any human interaction, be prepared for sudden bouts of the laughter of recognition.

While trying to sustain some level of compassion for the elderly, frail and sometimes dying patients, the overworked clinicians and staff must work under the knuckles of a red-taped hospital administration which in turn is squeezed by the larger powers-that-be of a broken and somewhat Kafkaesque healthcare system, CMS/Medicare, digital technology, hospice service salespeople, and other monkey wrenches.

Add the personal goals, quirks and challenges of each character and you get unexpected and hilarious situations that may ring very true for those involved in palliative care, long-term care, and hospice.

For example, floor nurse Dawn Forchette (Alex Borstein) knows her profession well but is insecure and so hungry for love that she foists a zero-to-sixty commitment on the unwitting supervising nurse Patsy de La Serda (Mel Rodriguez) who is still in the dark about his own sexual preferences.

​
Nurse DiDi (Niecy Nash) is probably the most likable and steady character, keeping a level head and caring compassion while navigating the chaos of quirky protocols, emotional meltdowns of coworkers, and the overarching bureacracy. In once scene, DiDi lets the family enter the room of the mother who just died. "Take as long as you want," DiDi says, quickly followed by Dawn's whisper of "we actually need that bed by 11."


The frazzled department lead Dr. Jenna James (Laurie Metcalf​), in denial that she has reached a career dead-end, still clings to the dream of producing groundbreaking research about fecal anomalies, so much so that she chastises a nurse for removing a critical study sample of "feces, not a turd" left on a chair by one of the more impish dementia patients.


Several ancillary characters add depth, such as the sweet and eager hospice volunteer; the mixed batch of ornery, sweet, or just plain vacant patients; the ingratiating saleswoman for a profit-driven hospice care enterprise; the steady stream of various family members who argue, compete, cajole, or cry over the mother, father, sister, in the hospital bed.

Based on the BBC series of the same name, the American version of Getting On just completed its second season but can be viewed on HBO or HBO Go. ​Start from the beginning with Season 1 to see how character dynamics are established, although any episode presents hilarious and familiar situations.

(Note: we have a short poll about your thoughts on this show. It doesn't matter if you have seen it or not. Let us know what you think - Ed.)

Season 1 Trailer


Season 2 Trailer


As a volunteer with Hospice by the Bay, ​Christine Okon​ offered ​gentle bodywork to many people at the end of life, feeling privileged to hear their stories. She learned much from Les Morgan who founded Growth House, ahead of its time for using technology to build a social network for those involved with EOL. Christine lives in San Francisco and works for Kaiser Permanente on the patient safety aspects of their EHR.

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by Russell K. Portenoy, MD

(Sometimes a simple idea comes along and while revolutionary, you sit there thinking, why didn't I do that? Many organizations and academic departments have great content experts, probably lecturing to learners every week. But who among us have consistently made these available for free online, in addition to providing free CE credits. We all have access to those tools, but someone did it first and with a year long commitment to teaching. Pallimed asked Dr. Russell Portenoy to explain the origins of a simple yet innovative project, the MJHS palliative care webinar series. Maybe we could see this replicated in other places? - Ed.)

I am grateful to Christian Sinclair for the opportunity to write about the decision to create a new webinar series for those interested in palliative care and to structure in a way that, hopefully, ensures broad access. The back story begins with a decision I made recently to leave the hospital setting, where I had worked for 30 years, to assume a clinical and academic role in a corporation is solely focused on community-based care. MJHS is a large health system in New York, and I had been working part-time for several years in one of its units—MJHS Hospice and Palliative Care. The latter organization maintains a large hospice program and several cutting-edge, community-based palliative care programs.

In 2014, the MJHS corporate board made a strong commitment to grow high quality hospice and palliative care programs, and concurrently decided to create a new not-for-profit entity that would pursue academic initiatives in palliative care, including inter-professional training programs, clinical research, and quality management. In mid-June, I became the first Executive Director of the new MJHS Institute for Innovation in Palliative Care and assumed a full-time role as Chief Medical Officer of MJHS Hospice and Palliative Care. Almost immediately, I was joined in the Institute by 10 doctoral level professionals, including experts in education and instructional design, research, and quality.

We have hit the ground running, and are particularly pleased with the decision to create a new online inter-professional webinar series as one of our first projects. Underwritten by a small grant, the series will show 21 live webinars during the first year, approximately one broadcast every two weeks. The topics are relevant to the entire interdisciplinary team.

The first five presentations, all presented by the faculty of the MJHS Institute, included “Palliative Care: Changing the Health System Through Emerging Models”, “Caregiver Distress and Burden”, “Opioid Therapy in the Medically Ill: Principles of Administration”, “Grief and Bereavement”, “Prognostication I”, and "Prognostication II"  The next live webinar is Tuesday December 23, 2014 from 12:30pm-1:15pm ET on "Drug Therapy for Neuropathic Pain in the Medically Ill." You can see a full list of past and future topics along with slide decks to download on the Institute website.

After each presentation, the webinars are posted online for one year, and both the live and archived webinars will provide continuing education credits to physicians, nurses and social workers. There is no charge for attendance at the live webinar or access to an archived installment. The creation of high-quality education with a low barrier to entry is consistent with the mission of the new MJHS Institute for Innovation in Palliative Care. Through our email reminders to potential attendees,  we have started building our own community (contact us at www.mjhspalliativeinstitute.org to get on the email list). We are looking forward to many more contributions and collaborations of this type.

Russell Portenoy, MD is the Executive Director of the MJHS Institute for Innovation in Palliative Care, and the CMO of MJHS Hospice and Palliative Care. He is also a professor of Neurology at Albert Einstein College of Medicine and editor of the Journal of Pain and Symptom Management.

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by Eric Widera, MD

In 2013, there were 43.8 million prescriptions for tramadol filled in the U.S. It has a slightly different method of action from many other pain medications, as tramadol is both a mu-opioid receptors agonist and a reuptake inhibitor of serotonin and norepinephrine. It is also thought that the opioid activity is due to both the parent compound and the more active O-desmethylated metabolite (which, like codeine is metabolized by CYP 2D6 and therefore gives the same big inter-individual differences in pharmacokinetics).

The overall efficacy as a pain medicine is comparable to that of other weak opioids. Most people know it is associated with serotonin syndrome as well as seizures especially when used with other medications that lower seizure threshold. A new study that came out in JAMA IM reveals a pretty robust association between tramadol use and hospitalizations for hypoglycemia, even in those without diabetes.

The Study

The authors of this study put together a large population-based cohort of patients from the UK who were either initiating tramadol or codeine therapy for non-cancer pain. They excluded those who were prescribed other opioids, as well as those with cancer and those previously hospitalized for hypoglycemia in the year before entry into the study.

The authors also did a whole bunch of different types of analysis to prove their point (nested case-control, cohort and case-crossover analyses) that would take me five blog posts to write about (if you are interested in the details, here is the article). They also controlled for a boatload (yes that is a technical term that I’m using) of potential confounders.

The Results

The analysis included 334,034 patients (28,110 taking tramadol and 305,924 taking codeine). Tramadol and codeine users were similar on nearly all baseline potential confounders. The authors found in this cohort:

• Tramadol use increased by more than 8 from 1999 to 2011
• Patients taking tramadol had a significantly higher risk of hospitalization for hypoglycemia (odds ratio 1.52)
• The risk of hospitalization for hypoglycemia was highest in the first 30 days of use (OR, 2.61) Patients NOT on a diabetic medication were at increased risk of developing hypoglycemia severe enough to be hospitalized compared to those those taking diabetic medications (adjusted odds ratio of 2.12 vs 1.11)

The Take Home Point

A lot of health care providers have the misconception that tramadol is a safer alternative to more traditional opioids like morphine. This study adds further evidence that this is just not true, and that we should add hypoglycemia as a risk, even in patients who do not have diabetes.

Eric Widera, MD is co-founder of GeriPal and fellowship director at UCSF. We are happy to have him post on Pallimed for the second of 3 posts owed to Pallimed from GeriPal for the World Series of Blogs wager of 2014.


Fournier JP, Azoulay L, Yin H, Montastruc JL, Suissa S (2014). Tramadol Use and the Risk of Hospitalization for Hypoglycemia in Patients With Noncancer Pain. JAMA Internal Medicine PMID: 25485799 (OPEN ACCESS!)

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Methadone: A pharmacologically unusual drug, that inspires great passion.

I've prescribed more and more of it over the years, and I guess I'm in the Methadone: It's a Good Thing, But Probably Not Liquid Jesus camp of thought. While I think most of the patients I place on methadone are helped, a significant minority are not, and a few are clearly harmed (increased side effects, etc). I had a oncology PA I work with today, when we were chatting about whether or not to rotate a patient to methadone, note something along the lines of "I've been seeing more and more people on it, and many of them just seem to be zoned out...flattened." A single, anecdotal observation to be sure, but I wasn't shocked to hear her say it as I'd seen it a few times as well.

So I've been paying attention to the rumblings in our literature, which have been around for a while, around using very low-dose methadone as a co-analgesic, as well as the emergence of a discussion in Journal of Palliative Medicine of using scheduled low-dose methadone plus scheduled low-dose haloperidol (+/- use of other short-acting opioids prn if needed).

The proponents of this practice seem to argue that it prevents opioid-induced hyperalgesia (they even put it in the title); that it's a very effective and tolerated analgesic strategy: see here for their publication laying this out. This was a retrospective case series of hospice patients with no comparison group: needless to say it proved nothing and prompted this terse and I think entirely justified letter saying, essentially, Nice idea but you should back off on the over-reaching claims until you have data.

One of my passionate, pro-methadone colleagues carries the case-series around and has been gung-ho about trying it. I've told him I think we should wait for more data and that this is practice should be treated as extremely hypothetical. While we're prescribing methadone anyway, in particular I'm worried about committing our patients to scheduled haloperidol, especially as many of our patients are not dying and may live for a long time and I worry about long-term extrapyramidal side effects. I've also remained extremely skeptical neuroleptics have any real analgesic properties, but one has to acknowledge that one can be wrong, and can be convinced otherwise by good data, and I'll note that in pinging this question off Cochrane it seems like there is a smidge of data that neuroleptics are analgesic. A smidge.

Which brings us to today, and the reasons I'm writing this.

The methadone+haloperidol group has published their 2nd foray. This time a hospital-based case series, again uncontrolled. It's from a single hospital, and looks at patients who were started on, or rotated to methadone after receiving a palliative care consultation (n=43). They're not entirely clear but my sense is that this team's practice was to routinely rotate (they don't say under what circumstances they actually do the rotations, if not automatically) all their patients to methadone+haloperidol.

They used low doses, and were not rotating patients off of very high doses of other opioids (median morphine equivalent daily dose was 78mg before rotation): most patients ended up on 5-10mg of methadone a day and 1-2mg of haloperidol a day. Small doses. Key to their strategy as they present it  is that they really try to minimize patients' exposure to other opioids, I believe because they consider the hyperalgesic effects of them to have a significant clinical impact, and stopped them completely in many of them (some of them they didn't and continued a prn short-acting non-methadone opioid).

Basically by week 1 and 2 after rotation, median pain scores went from 5/10 to 0/10 in the groups. Yup. And this:

"There was a significantly greater reduction in severe pain scores by week 1 for full conversion, using haloperidol for breakthrough pain, compared with tapered conversion, using short-acting opiates (Fig. 2; p=0.02 for difference). Similar reductions in scores were seen in patients with cancer and noncancer diagnoses (Table 4; p=0.06 for difference). Significant improvements in pain scores were seen for those with an initial MEDD of ≥250 mg (median, 415 mg) and for those with a MEDD of 30 mg to 80 mg (median, 37.8 mg), but there was a significantly greater improvement associated with highest-dose opiate group (p less than 0.001 for difference). The patient with the highest initial MEDD (1600 mg) had full conversion to methadone 7.5 mg/day, for a conversion ratio of 213."

To be clear, these are  uncontrolled data. We don't know what other interventions were tried, we don't know what would have happened if they left the patients alone (regression to the mean and all that good stuff), we have no organized collection of data on side effects and toxicities, etc etc.

But, I have to say that after reading the most recent study, I am officially intrigued, and no longer willing to discard this idea on the without further consideration. 

So, to the authors of this line of investigation, I implore you - keep it up, but please move onto to higher quality investigational methods. Yes a double-blinded RCT would be great, but even a prospectively planned and implemented observational study of a clearly defined protocol (including patient inclusion criteria) which collects prospective safety data (not just efficacy) would be a big move in the right direction.

Also, if anyone out there is doing this - I think it's been an idea that's been floating around in various forms for years (?decades) - please comment and share your experience.



Salpeter SR, Buckley JS, Buckley NS, Bruera E (2014). The Use of Very-Low-Dose Methadone and Haloperidol for Pain Control in the Hospital Setting: A Preliminary Report. Journal of Palliative Medicine PMID: 25494475