Wednesday, December 31, 2014
by Emily Riegel, MD
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.”
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
Wednesday, December 31, 2014 by Emily Riegel ·
Monday, December 29, 2014
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)
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
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
Monday, December 29, 2014 by Allie Shukraft ·
Sunday, December 28, 2014
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.
Sunday, December 28, 2014 by Pallimed Editor ·
Friday, December 26, 2014
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|
Image credit: Google search
Friday, December 26, 2014 by Amy Clarkson ·
Wednesday, December 24, 2014
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:
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)
Wednesday, December 24, 2014 by Holly Yang, MD ·
Tuesday, December 23, 2014
(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
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.
Tuesday, December 23, 2014 by Christine Okon ·
Monday, December 22, 2014
(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.
Monday, December 22, 2014 by Pallimed Editor ·
Sunday, December 21, 2014
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 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 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)
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!)
Sunday, December 21, 2014 by Pallimed Editor ·
Wednesday, December 17, 2014
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
Wednesday, December 17, 2014 by Drew Rosielle MD ·
Tuesday, December 16, 2014
As national news and media sources talk about Being Mortal and the IOM report - Dying in America quite literally and figuratively; and Palliative Care is seen as a major solution in the conversations - it is important who is leading the conversation. People are overwhelmed with the complexities of the healthcare system and overload of misinformation.
As Hospice and Palliative Medicine (HPM) professionals, we strive to guide our patients and families through the complexities of the system everyday, it is all the more important for us to engage with the public outside our offices. The benefits of public engagement range from increasing awareness about benefits of hospice and palliative care to being #hpm ambassadors, recruiting volunteers, advocating for policy reform, raising funds for advocacy, education, research and improving access.
T1: Examples of public engagement campaigns via HPM and non-HPM professional organizations and non-profits. What have we learnt?
(A quick search led to these, and by no means is comprehensive - feel free to suggest additions)
- AAHPM - PalliativeDoctors.org and YouAreSick. It;'s Serious video (awareness);
- NHPCO - Foundation (funding), Moments Of Life (awareness)
- Hospice Action Network (advocacy);
- HPNA - Advancing Expert Care; HPNF (Foundation)
- CAPC - GetPalliativeCare.org (awareness);
- American Cancer Society - ACSCAN QOL Campaign (advocacy, awareness, fundraising);
- ASCO - Cancer.Net (awareness), Foundation (fundraising).
T2: What would be the ideal ingredients of a viral Social Media campaign, that raises the bar for HPM public engagement?
We have all witnessed how the ALS Bucket Challenge and Stand Up To Cancer recently swept away the fundraising industry. A little while ago, it was the Livestrong Foundation campaign, the Alzheimer's Association and so on. We have seen how crowdfunding has proven valuable to HPM awareness and care delivery - recent Pallimed blog. Do we think, a HPM campaign can garner enough celebrity endorsement, public support, and much needed impetus via social and new media to establish the right brand for Palliative care amongst masses?
T3: Value of the Brand - How can we make it stick and pull people in?
What are we talking about? Serious illness, advanced illness, living well with serious illness, dying well, quality of life, healthcare system navigators, alleviating suffering, assisting caregivers and more. Our definition isn't as simple as professionals treating cancer, alzheimer's, heart disease, ALS etc. How can we balance our diversity and focus to connect with the public?
This is our last Tweetchat of 2014 as we will be on break for the last two weeks of the year. We hope you will join us!
What: #hpm chat on Twitter
When: Wed 12/17/2014 - 9p ET/ 6p PT
Host: Ankur Bharija, MD Follow @DrAnkurB
Facebook Event Listing: https://www.facebook.com/events/771343319585912/
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
Ankur Bharija, MD is a clinician educator in Geriatrics and Palliative Care, works at the PACE of East Boston Neighborhood Health Center and Faculty at Boston University School of Medicine. He is "wannabe" culinary Indian cook, a runner and enjoys traveling and photography.
Tuesday, December 16, 2014 by Pallimed Editor ·
Tuesday, December 9, 2014
Seeing people break out of the box in their thinking is one of the things I enjoy about palliative care and hospice. Dr. Michael Fratkin and his Resolution Care team are staking a claim on innovative funding when it comes to palliative care with their crowdfunding initiative on the Indiegogo platform. The campaign is nearing the end (December 11, 11:59pm) and frankly I am impressed at the level of funding he has been able to get from over 300 funders. The goal is $100,000 for this campaign, and as of the writing of this post they are almost past $60,000. And if they raise just $10k more to get to $70k, apparently a donor is willing to make up the rest to get to $100k.
If we raise $70k for the ResolutionCare #crowdfunding campaign by THIS THURS, a generous donor will contribute $30k! http://t.co/eRMpjLChy7Before we talk about Resolution Care more, I hope I didn’t lose you with the words crowdfunding or Indiegogo, so let me explain briefly. Many people may have heard of crowdfunding via KickStarter, the platform that has probably been the most well known. Basically, you tell the world about the project you want to accomplish, and set up rewards at different levels for funding The range of rewards in crowdfunding campaigns are pretty wide from a thank you on social media to exclusive hard to get items. Sometimes the rewards are ancillary to the project itself (similar to getting a tote bag from NPR, or a coffee mug from your local symphony.) Other times the rewards are the actual product/service. you are supporting One end of life related crowdfunding success story you may be familiar with is the First Death Cafe in the USA by Lizzy Miles in 2012, who is now a Pallimed contributor. I’m sure many of you who have heard of Death Cafe’s may not have realized that this big movement start via crowdfunding.
— ResolutionCare (@MichaelDFratkin) December 9, 2014
In crowdfunding, there are a few big winners who may get a1000x the initial ask, but there are many more who barely get off the ground for several reasons. By using Indiegogo, the Resolution Care team doesn’t have to reach $100k to get the crowdfunded money, like you have to do on KickStarter.
The approach for Resolution Care to deliver palliative care is pretty straight forward for any readers of this blog with a few twists thrown in. You can read more about the delivery model for Resolution Care on their website. It is important to note the initial delivery site will be aimed at a rural population, but they have talked about expanding to more areas depending on the success of the program.
I have watched the crowdfunding sites for sometime for hospice and palliative care related projects. This is the first one I have seen looking at palliative care program delivery and development. Will this idea spring up in more areas? Are you planning to support this project? Why or why not? Is your hospice or palliative care program thinking of doing a crowdfunded project? Have you already completed one? These are not rhetorical questions, I really am interested to see what the wider HPC community thinks.
As we see more of these projects we hope we can bring them to you in an organized fashion. I know Lizzy and I have been batting around ideas, and if anyone else is interested to help cover this new trend, we would love to have you help out.
Go check out the closing days of the Resolution Care Indiegogo campaign and see if it inspires you to support them.
Image credit: Resolution Care - all copyrights reserved
Tuesday, December 9, 2014 by Christian Sinclair ·
Topic 1- Articulating the benefits and value of hospice care
The language we use when describing hospice services and articulating the value of hospice care for patients and families can affect both perceptions of hospice care and utilization of hospice services. During this tweetchat, I want to know how you describe hospice care and how your message shifts based on your audience. Give me your best description on the benefit and value of hospice care. What do you emphasize when talking about hospice services to community members, to referral sources, to colleagues, to administrators and to policy makers?
Topic 2- Maximizing the hospice experience for patients and families with a short length of stay
NHPCO’s Facts and Figures on hospice care in America calculated that the median length of stay for a hospice patient in 2013 was 18.5 days which is a decline from 2012. What practices, processes, approaches have you or your organization adopted to improve the quality of care for the short length of stay patient. Are there specific discipline specific practices you can share with the group?
What: #hpm chat on Twitter
When: Wed 12/10/2014 - 9p ET/ 6p PT
Host: Turner West Follow @turnerwest
Facebook Event Listing: https://www.facebook.com/events/963501140331093/
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
If you liked this, then check out Turner West's review of the CAPC 2014 conference.
Turner West, MPH, MTS is an educator and administrator at Hospice of the Bluegrass in Lexington, KY. He is married has a 16 month old with a “ask me about palliative care” bib and an 8 year-old St. Bernard.
by Pallimed Editor ·
Sunday, December 7, 2014
Cambia Health Foundation was founded in 2007 to make an impact on Palliative Care, Transforming Health Care and Children's Health. They are the corporate foundation of Cambia Health Solutions, a health insurance company that focuses on the Pacific Northwest and previously known as The Regence Group. Some of you may be familiar with what Cambia has done with the Sojourns Awards ($180,000 innovation grants), which have recently moved to a national focus and we discuss in more detail below.
Earlier this week, I interviewed Randy Curtis, MD, the director of the newly named Cambia Palliative Care Center of Excellence (Cambia PCCE) at the University of Washington (UW) and Peggy Maguire, president and board chair for the Cambia Health Foundation about this fantastic partnership.
Sinclair: Congratulations on receiving this grant! Randy, tell me what this award means to you.
Sinclair: Could you share the clinical history of your programs?
Curtis: The University of Washington Medicine includes the UW Medical Center, Harborview, and our two community hospitals Northwest and Valley for clinical service. We also have outstanding partners in education, research and collaboration at Children's and VA. Palliative care consultation services are present at each of those campuses, and they are all at different periods in their development. UW and Harborview have pretty mature programs.
Sinclair: Peggy, how did you start to connect with UW and Dr. Curtis?
Maguire: Randy is a preivous Sojourns Awards winner (2013) as is one of his colleagues Dr. Tony Back (2011). We first became familiar with their program as we were looking for palliative care leaders and innovators. That was our first connection. When the PCCE was founded at UW in 2012, Cambia Health Foundation made an initial grant to support them. Since then we have had touch points through our Sojourns grant making and awards program. As we got to learn more about the program and the leadership of the Center, we felt there was a really strong opportunity to spread the word about palliative care, both in creating awareness on the consumer side as well as the provider side.
Sinclair: Peggy, can you talk about Cambia Health Foundation's pivot from being a regional supporter to a national leader in supporting palliative care?
Maguire: Yes, I think one of the shifts is in the way we changed our Sojourns Awards, which initially was to recognize leaders in our geographic footprint. In 2014, we focused on emerging leaders from across the country who are doing really interesting projects in palliative medicine. We thought supporting them could develop the field and build a stronger workforce. In our 2014 Sojourns scholars program, we awarded 10 scholars $180,000 each over two years. We also paired those scholars with mentors and established leaders in the field. This allows each scholar to work on their innovations and projects. We're excited about what this group will learn from each other and the dissemination of their work. We hope it will have a big impact.
Also with the UW Cambia PCCE, we hope their outreach will help the Pacific NW be seen as a hub of innovation and leadership. What they develop here will have application not only in Seattle and the Pacific NW but the rest of the country. We think it will become a beacon for other PC programs and we are excited about that.
Sinclair: Randy, coming out of the gate what will be your focus in 2015 that we can get really excited about?
Curtis: We're focusing on both primary and secondary palliative care. One of our initiatives is to improve palliative care delivered by clinicians who are not palliative care specialists. We are developing palliative care training centers, where we offer training for interdisciplinary teams (social worker, nurse, doctor, and spiritual care). This program spans over a nine-month period, including three one-day intensive courses in Seattle, but also distance learning and video feedback. That is one of the programs we are launching right away. In addition, we are working with our faculty member Tony Back and his VITALtalk program to further training in primary palliative and specialty palliative medicine clinicians.
Sinclair: Burnout is a hot topic right now and with you getting a fantastic resource from Cambia like this - how do you see your balance between being really innovative and trying to figure out if you have the right amount of faculty and staff to accomplish day to day clinical duties? I know some who see this award may think, "I could do some of these things, but I don't have the faculty or the staff." How are you and the PCCE looking at this issue?
Curtis: This is a really key issue, and a focus of the center: looking at the ways to reduce the development of burnout and also address burnout when it does develop. We want to focus on the burnout of palliative care specialists, but also the burnout of people caring for serious illness for those doing primary palliative care. The other approach which will be key, which you alluded to is to build the workforce. A key reason for high burnout among palliative care specialists is the inability to fill positions that are funded because they are difficult to fill,. That workload stresses those who are trying to cover all the work. That is another area we will focus on as well.
Sinclair: Peggy, Many people across the country who pay attention to philanthropy and palliative care issues will be reading and talking about this grant within their teams and departments. Besides knocking on your door and calling you to say "Hey, we don't suppose you have any more amazing palliative care grants laying around?", how can something like this jump start the local philanthropic effort in other cities and regions? It obviously shouldn't have to be all Cambia, but don't we need to find other Cambia-like organizations to try and start doing something like this?
Maguire: I love that question. Our cause as a company is to transform health care and to create a more person-focused system. The Cambia Health Foundation is the philanthropic arm of Cambia and we take our role as a catalyst very seriously. If other organizations want to collaborate with us to help support great work, we welcome that. It would be wonderful if another funder called us up to collaborate or another funder was inspired to give a gift like this. We would be happy to work with like-minded partners. That is a fundamental tenet of who we are. We don't want to do it all by ourselves, We can be a catalyst to inspire others and make an impact on the field.
Sinclair: Any other points we did not touch on, which are important to the future of this program?
Curtis: A big part of naming the Cambia Palliative Care Center of Excellence is a responsibility on our part to serve as a resource to our region and the nation for programs that want to help identify donors and grow. We will be focused on outreach to provide that resource.
The second point is we have gotten to know the Cambia Health Foundation through the last three years through the Sojourns award program and it is a real honor to be associated with the name Cambia . Their values are in the right place; for them this about making health care more person-centered, incorporating patients and their families. That is a relationship I am very proud to be a part of. This is an opportunity because palliative care is at a tipping point. I think what Cambia is doing with the naming grant and other programs is contributing to that tipping point. With that, I believe there will be more opportunities for all of us to identify additional resources to find philanthropy and funding.
Maguire: Absolutely our dedication to palliative care runs very deep in our organization, and it is very personal to us, to the members of our foundation board. Palliative care is critical to the health care system in our country. I can't think of a better approach to patient care and having a workforce that is trained and skilled in palliative care will only help patients and families in health care.
Image Credit: Cambia Health Foundation
Photo Credit: University of Washington
Photo Credit: Cambia Health Foundation
Photo Credit: howardignatius via Compfight cc
Sunday, December 7, 2014 by Christian Sinclair ·
Saturday, December 6, 2014
Have you ever had a patient at home who was in need of dental care? Perhaps they were receiving hospice services or maybe they were just discharged from the hospital not on hospice, but still too frail to get to the dentist. Of course the focus is often on the medical issues, yet the most significant issue was broken rotted teeth, which made oral intake nearly impossible without pain. Clearly, the answer here is not opioids for pain control, but rather to take care of the root problem: access to dental care.
Clearly dentists and their staff are not part of a hospice or palliative care IDT, but when you need them, boy do you need them. If the short case I outlined is not clear enough for you, I would really encourage you to read “Love” by Jean-Noel Vergnes, DDS, PhD recently published in the Annals of Internal Medicine (paywall). Written by a dentist in France caring for his wife who had a stroke and was desperately in need of dental care he himself could not provide, it illustrates the anguish of not being able to provide care you know someone needs.
“And little by little, it got difficult to clean her teeth with a toothbrush, too; she made little animal noises all the time, as if we were hurting her. So, it’s true that I didn’t take that much care of her mouth.”Yet in the end there is a deep satisfaction when a dentist is found who will come to the home and provide the much needed care for his wife.
“Knowing that such a possibility existed made me change my mind. Actually, I’d always had this little voice in my head telling me that I wasn’t doing what was best for her, that I might be convincing myself that it was useless just because I didn’t have the strength to get on with it.”Reading this story makes me reflect on the access to home visit dentists in my metro service area. When we need a dentist, the team works frantically to find someone willing to come out. So what are the barriers for a dentist? Is it malpractice insurance out of the office? Lack of access to the ever more complicated tools while in someone’s home? Lack of adequate reimbursement? Lack of time? I know many dentists do charitable activities in urban and foreign locations (usually for children), so I know the barrier is not likely to be a cold, uncaring heart. How can we as palliative care providers strengthen this relationship with dentists so the care is not needlessly delayed? The answers are likely complex and different in every community, and I know the answer is not the DentiDrill Home Dentistry Kit. Yet, I’m hopeful by asking this question of our great communities we might find a better answer together. Then maybe more people can have memories like this:
“She gave me a wonderful, broad smile. She was beautiful, so very beautiful. Ah, how can I put it? I knew that smile would be her last. I smiled back at her, savoring the moment . . . a moment that I couldn’t even try to describe. And that smile was, indeed, her last. I’ll remember it every day that I have left to live.”
Vergnes, J. (2014). "Love", Annals of Internal Medicine, 161 (10) DOI: 10.7326/M14-1076
Saturday, December 6, 2014 by Christian Sinclair ·
Thursday, December 4, 2014
(The following is part of a three-post progressive blog about advance care planning, prompted by the Centers for Medicare and Medicaid (CMS) decision not to pay for the new “complex advance care planning” codes in this year's Medicare Physician Fee Schedule. Now is the time to tell CMS why you support reimbursement for these important services! The agency is accepting public comments through Dec. 30 —it’s easy to submit comments online!
Please also see AAHPM Public Policy Committee Co-chair Gregg VandeKieft's update on how key organizations are collaborating beyond AAHPM to make Advance Care Planning efforts succeed. And don't miss out on AAHPM State Policy Issues Working Group Chair Paul Tatum’s GeriPal post where he makes the case that it’s time for advance care planning to become routine for patients with serious illness. - Ed.)
Late on October 31st, the Center for Medicare and Medicaid Services (CMS) published the 1185-page 2015 Medicare Physician Fee Schedule (MPFS). What is the MPFS? If you don’t know, don’t worry—the majority of Americans (including many health care professionals) have no idea this document exists, and until recently I was among them.
In short, the MPFS lays out how Medicare intends to reimburse ‘practitioner’ services for the coming year. ‘Practitioners’ include physicians, nurse practitioners, physician assistants and other professionals who provide ‘qualifying’ services to Medicare beneficiaries. These services are most often described by Current Procedural Terminology (CPT) codes, and valued through Resource-Based Relative Value Units (known as RBRVUs or just RVUs).
I have been fortunate enough to be supported over the past year by the American Academy of Hospice and Palliative Medicine (AAHPM) to serve as their advisor to the AMA’s Relative Value Scale Update Committee or ‘RUC’, which recommends RVU values to CMS for each and every CPT code. In this role, I’ve been able to advocate for the work that HPM professionals do every day, in the process by which those services are described for CMS to determine how much they will pay for them. In other words, HPM has a voice in the process (or ‘seat at the table’, choose your favorite metaphor), in helping CMS understand what it takes to deliver high-quality care for patients with serious illness.
Why should we care? Medicare fee-for-service covers 33 million older and disabled Americans, and in most markets is THE largest payer of hospice and palliative medicine practitioner services. It also often sets payment benchmarks for commercial payers (including Medicare Advantage plans, which cover an additional 14+ million beneficiaries). As a result, the MPFS tells us how and how much HPM practitioners will be paid for a large part of the work they do. So, dense and obtuse as this all may seem, it matters.
The 2015 MPFS matters even more to HPM providers, as it (for the first time) includes Advance Care Planning (ACP) services. These services are described as “…the explanation and discussion of advance directives such as standard forms (with completion of such forms, when performed), by the physician or other qualified healthcare professional; face-to-face with the patient, family member(s), and/or surrogate.” While the descriptor mentions ‘form completion’, these codes really cover more substantive discussions about goals of care, treatment options, values and preferences.
The CPT and RUC processes have developed and valued two codes for these ACP services: 99497 (first 30 minutes, valued at 1.50 RVUs) and 99498 (each additional 30 minutes, valued at 1.40 RVUs). They can be billed in addition to Evaluation and Management (E/M) codes, reflecting the ‘separate and identifiable’ (in CPT lingo) nature of more complex ACP discussions.
The ACP codes have a backstory (see Pam Belluck’s excellent piece in the Aug 30 New York Times) that brushes up against everything from ‘death panels’ to a growing number of commercial insurers and Medicaid programs who have already begun to pay for ACP services. In the 2015 MPFS, CMS acknowledged both codes, but stopped short of authorizing Medicare payment for them for 2015 (more on that below).
I want to pause here to acknowledge two things about these codes. First, it is a major step forward even to describe and value advance care planning services, the enormous impact of which is demonstrated by a growing body of research and the daily work of health care professionals who perform them (including many Pallimed readers). Yes, it’s many years too late and still part of a system of many misaligned financial incentives, but it’s an important start. Second, and more importantly, is that support for ACP services is broad and deep within the physician community. The most striking part of my experience working on these codes has been the coalition that formed to advocate for them.
The American Geriatrics Society − which only received a permanent seat on the RUC in early 2012 – has taken the lead to organize this coalition, providing staff support for stakeholder societies (including AAHPM) to join forces and advocate for the ACP codes through the RUC process, and in joint communications and face-to-face meetings with CMS. There are big players involved – like the American College of Physicians and the American Academy of Family Physicians which together represent over 250,000 physicians – along with specialty societies like AMDA – The Society for Post-Acute and Long-Term Care Medicine, the American Academy of Home Care Medicine, the American Academy of Neurology , and the American Thoracic Society. The physician leaders from these groups continue to speak eloquently and passionately about caring for patients with serious illness, and specifically about the necessity of high-quality advance care planning.
Now it’s your turn. While Medicare did not agree to start reimbursing the advance care planning codes for 2015, they did signal openness to reimburse them in the future, and invited comments until December 30. Individual comments really do matter to CMS: staffers read every submission, and individual comments are actually cited throughout the MPFS as rationale for payment decisions.
So, it’s time to tell CMS why you support reimbursement for advance care planning services. You do not need to be a physician or even a clinician to comment . A couple of things to consider when writing your comments:
- Tell why you think it’s important to pay for ACP services through a specific mechanism. CMS has suggested that it believes Medicare already pays for ACP services through the Evaluation and Management (E/M) and extended service codes.
- Tell them about the unique value of advance care planning, and how it is ‘separately and identifiably’ necessary in addition to all other services (medical therapy, symptom management, etc.).
- Be specific, be yourself, and write about what you know. It’s OK to reference the literature about ACP services and palliative care, the IOM report, the importance of tracking the frequency ACP is performed, the needs of an older and sicker society etc., but it’s more powerful to speak from personal experience.
- Tell patient stories that illuminate a connection between high quality advance care planning and better care for your patients. Every HPM professional I know has dozens if not hundreds such stories.
Now is the time to tell them.
Comments are open until December 30 and can be submitted online.
Don't forget to check out the other two blog posts in our progressive blog party! Click the images below.
Thursday, December 4, 2014 by Pallimed Editor ·