Friday, October 24, 2014

A Physician Review of Atul Gawande's "Being Mortal"

The perspective of the storyteller is at the heart of Gawande’s latest book Being Mortal: Medicine and What Matters in the End. He tells us that life is meaningful because it is a story (p 238). In our current society, the end of the story tends to be one of dwindles and loneliness in a nursing home or of anxiety-driven medical interventions within a hospital. He offers up a different story.

Gawande describes styles of assisted living that truly assist living; champions the need for geriatricians; and encourages each reader to “contemplate the unfixables in our life, the decline we will inevitably face” (p 47). He reminds readers to think not simply about being mortal, but also about what makes life worth living. Through telling the stories of others, he draws out the importance of defining the simple joys and components of quality of life.

In the second half of the book, Gawande shows how palliative care can help in defining what matters most to a seriously ill patient. Through time with a hospice team he learns, “The difference between standard medical care and hospice is not the difference between treating and doing nothing… the difference is in the priorities” (p 161-162). Within hospice and palliative care, the priority of quality of life becomes emphasized over quantity of life (life extension). He points out that having better quality can lead to quantity.

Gawande also talks about patients and families not ready to confront the reality of incurable disease. As Jon Stewart summarized during the October 5th interview on The Daily Show, Gawande shows how a conversation about mortality can be reasoned and compassionate. Gawande learned more about such a patient-provider conversation style from Dr. Susan Block. He outlines the content of his lessons from her, including advice to limit the phrases that distance yourself as a human from the patient in front of you: “I wish things were different” or “I am worried” (p 182).

And because this “storyteller” (or reviewer) read the book as a palliative care provider, I found the book to be more than a 286-page advertisement for the work we do.

  • I appreciated his description of Carstensen’s work on the “socioemotional selectivity theory” showing that when life’s fragility is primed, people’s goals and motives in their everyday lives shift (p 94–99).
  • I noted the buried call for meaningful metrics within the world of assisted living (p 105) as well as the call to train palliative care providers out of business (p 260).
  • I chuckled when he shared how he was asked if a patient was dying and he noted, “I wasn’t even sure what the word ‘dying’ meant anymore,” (p 157) and goes on to say “We’ve built our medical system and culture around the long tail [of a patient-survival curve]” (p 175).
  • I resonated when he said we are asking too much of families when we say “All-out treatment, we tell the incurably ill, is a train you can get off at any time – just say when” (p 187). Whenever I am in a care conference and hear that phrase, I let families know that palliative care ensure we stop at the train depots and talk about whether to stay on the train.
  • I recognized the pendulum between the paternalistic relationship and the informative relationship and his appreciation for shared decision making, or a middle ground called “interpretive” (p 199-202).

“Endings matter, not just for the person but, perhaps even more, for the ones left behind” (p 232). Such awareness from his own father’s story speaks even more to the world of pediatric palliative care.

As he summarizes in the epilogue, “being mortal is about the struggle to cope with the constraints of our biology” and our job in medicine is not only to ensure health and survival… “it is to enable well-being” (p 259). Being Mortal (the book) highlights the importance of talking about what is important for feeling good in everyday life and letting those things guide us as the end of life draws near.

Disclosure of Material Connection: Neither the author nor Pallimed have received any compensation for writing this post. Neither the author nor Pallimed have any material connection to the brands, products, or services mentioned. Some of the links in the post above are “affiliate links.” This means if you click on the link and purchase the item, Pallimed will receive an affiliate commission. Regardless, we only recommend products or services we believe will add value to our readers. This disclosure is in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

Friday, October 24, 2014 by Jenni Linebarger ·

Tuesday, October 21, 2014

Palliative Care Mandate for California’s Medicaid Patients (SB1004)

On September 25, 2014, California Governor Jerry Brown signed a Senate Bill which requires the Department of Health Care Services (DHCS) to assist Medicaid managed care plans in delivering palliative care services. Essentially all Medicaid patients in California are in managed care plans.

Why is this happening?

Because Governor Brown and lawmakers love palliative care… well, I hope so, but The California State Health Care Plan is focused on four different aspects of the health care system that experience particularly high costs—uncoordinated care for people with complex chronic conditions, maternity care, end of life care, and accountable care communities. Within this initiative, a pediatric palliative care pilot program called Partners for Children actually incentivized this law.

The pilot showed significant cost savings for the State’s Medicaid program. Preliminary analysis indicates that the program improves quality of life for the child and family, average days in the hospital fell by one-third, and shifting care from the hospital to in-home/community based care resulted in cost savings of $1,677 per child per month on average.

This is exciting!! What are the next steps?
  • DHCS will consult with stakeholders to establish eligibility criteria for palliative care services.
  • DHCS will establish standards and provide technical assistance for Medicaid managed plans that ensures delivery of palliative care services in a manner that is cost-neutral to the general fund.
What services could be provided?
  • Essentially hospice-like services—similar interdisciplinary services provided to Medicaid hospice patients. Hopefully in consultation with stakeholders, DHCS will determine the amount of services needed.
  • Curative treatment is also available, to the extent that the services are not duplicative.
Who will be eligible?
  • It depends on the eligibility criteria set by DHCS in consultation with stakeholders, but generally individuals whose conditions may result in death, regardless of the estimated length of the individual’s remaining period of life.
Who could provide these palliative services?
  • Licensed hospice programs that are contracted with Medicaid managed care plans
  • Licensed home health agencies that are contracted with Medicaid managed care plans
The devil is in the details

The eligibility criteria could be a stumbling block. The criteria can’t be too hot or too cold; they need to be just right. The world of hospice care knows how difficult admission criteria or guidelines can be, but at least here we won’t have to foretell the future with a specific prognosis. While the pediatric pilot program is producing good data, one could argue that the criteria are too strict in some areas. For example, very ill children sometimes suffer from rare diseases that do not fall into the disease specific criteria. While there is an “other” (non-disease specific) category, providers tell me it has been difficult to refer under this category. Hmm, makes me think about debility unspecified.

Reimbursement for programs could be another stumbling block. Hospices and home health agencies will not be lining up to participate if they have to run these programs at a loss. After the initial three-year pilot period, the reimbursement for programs needed to be increased as some programs were struggling to break even. A monthly administration payment was added. Hopefully they have found the win/win/win spot.

The current reimbursement for the pediatric palliative programs (extrapolated from information in the bill) is about 21% of the hospice routine level of care reimbursement. In short, the same level of care cannot be provided. Maybe the difference in reimbursement is fine because the acuity of care should be less, but it might be difficult for hospices to flex their staffing and visit models for these patients. It may require a ‘new’ team focused on these patients specifically.

The upside could be huge

The California Hospital Association was a supporter for this bill. Many hospitals and health systems will face significant losses if patients are readmitted to the hospital within 30 days after discharge. I don’t know about you, but I know a number of patients who are frequent flyers in spite of a tidy discharge plan. This new service could have a significant impact there.

As demonstrated by the pediatric pilot, this is an opportunity to show how palliative care can improve the value of care (high quality, low cost) in a much larger way. If data collection is done correctly, my hope is that it will bolster the growing evidence that palliative care not only improves quality of life, but also helps people live longer. Finally, if California doesn’t stumble too much, this could be a nice blueprint for other states.

Gary Buckholz, MD, FAAHPM is an associate clinical professor at UC San Diego and part of the Doris A. Howell palliative care consultation service.

Photo credit: Emily Riegel

Tuesday, October 21, 2014 by Pallimed Editor ·

World Series of Baseball and Blogs: Pallimed (KC) vs Geripal (SF)

When my adopted hometown of Kansas City is going this crazy over the Royals being in the World Series for the first time in 29 years, you start to get caught up in the fun.  So to add another layer on top of the fun, I decided to make a friendly wager with San Francisco's very own Eric Widera and Alex Smith of Geripal.  Several bloggers for Pallimed are based out of the Kansas City metro or have Kansas City roots (Amber Wollesen, Amy Clarkson, Holly Yang, Emily Riegel, Gary Buckholz, Jenni Linebarger, John Hennessy) although we (like Geripal) have representation from all over.

So we have the San Francisco Giants/Geripal versus the Kansas City Royals/Pallimed for the World Series of Baseball/Blogs.

The basic rules are thus:

- For each loss in the series, the losing blog must write a post for the opposing blog. So, for example, after the Royals crush the Giants in Game 1 Tuesday night, a Geripal blogger will write a post for Pallimed. Timing doesn't have to be the same night, so when the Royals complete their sweep 4 games to zero, the Geripal authors can take their time writing their wonderful palliative articles.

-In addition, at the end of the series, the losing blog must send a dinner themed from their city. So for example, in the unlikely event that the Giants break America's heart since the nation is obviously rooting for the Royals, we at Pallimed will send burnt ends and BBQ from Joe's Kansas City, Boulevard Beer Tank 7 Farmhouse Ale, and Christopher Elbow chocolates. When the Royals win, GeriPal will send Pallimed a dinner of something like sourdough bread, Mt. Tam Cheese, and It's Its.

We may negotiate the finer details, but those are the basics. If you the readers come up with any other grand ideas for this wager, please let us know!

And Alex and Eric...Hunter Pence thinks a blog is something that comes out of his nose.

by Christian Sinclair ·

Monday, October 20, 2014

Ebola and the Palliative Clinician

Who doesn’t feel a wrenching in their heart? The Ebola virus, first recognized in 1978, killed less than 2000 people in its first 35 years and double that number in the past 10 months. According to the World Health Organization 416 health care workers have contracted Ebola and, at least, 233 have died. That is almost 6% of deaths.

As we all know a new, more widespread outbreak of Ebola had started. I began to read about the virus, the symptoms, the treatment, and the spread. And I recalled my month long work at a hospital in Zambia a few years ago where the TB isolation ward was anything but and supplies rarely arrived as planned.

A few weeks ago, I started thinking, “I could go help out”. For one of the first times, my skill set was needed. Gowning up and providing supportive care is what I do best. A palliative care doctor could do a lot more for a patient with Ebola than a trauma surgeon, an electrician or a body retrieval dog. And given the lack of infrastructure, soldiers are now being sent, including 150 from nearby Fort Campbell, to build hospitals and use their other non-combat skills.

I kept thinking I could go to West Africa with full understanding the risk was high I may not come back well, or even alive, because that is already happening to our palliative clinical peers. Miata Jambawai, a member of Sierra Leone’s Ebola Rapid Response Team writes, “Our doctors are dying. Our nurses are dying. Our lab technicians are dying and help does not come”. One of the doctors she referenced was Olivet Buck, a palliative care specialist, the 4th Sierra Leone doctor to die from the outbreak. William Pooley (link?), the first Briton known to have contracted Ebola is a palliative care nurse who selflessly volunteered to work in a Sierra Leone hospital where 15 other nurses had died. He was infected with Ebola and survived and today is starting work again to help others with Ebola in Freetown, Sierra Leone.

I could die and for the first time in my life, I was consciously ready to die. I am slightly past middle aged, my daughter is about to graduate college and very capable, my dog is old and won’t be around much longer. I have traveled all over and done pretty much anything I wanted to do. I was OK with the risks of going to Africa.

Trouble was, no one else agreed with me. No one else thought my life was worth the help I could give. When I told my daughter, she was aghast and dead set against it – she was so afraid of losing me, that I couldn’t bear it. My friends reacted similarly. Only my boyfriend encouraged me but he’s a different breed altogether and has a physicist’s perspective on risk.

I didn’t go, but this is what I learned. When a patient hears they have a terminal illness, they may be totally ready to die but if family is not ready – there is little they can do to change the outcome. At some point, of course, biology takes over and death ensues but until then, what a mish-mash of emotions.

If you have been in hospice and palliative care for any amount of time, you have likely seen the patient who is ready to die, but the family is not there emotionally yet. Imagine someone with ribs so skeletal there was no space to place a stethoscope and whose black gangrenous foot throbs below the covers. She says to you, "I hope it won't be too long, because I am ready." In response, her family nervous but cheerily quips, “You might outlive us all.” Hoping for a natural death but trying so hard to stay for others. I have never thought so intimately about this from the perspective of a patient. Mostly I think like a family member – I don’t want anyone around me to die.

This lesson may pale in comparison to the weightier dilemmas and challenges of Ebola but represents the one and only positive outcome I see from this tragic disease.

Ann Colbert grew up in Michigan, completed her residency in Rochester, NY in 1985, moved to Northeastern Kentucky to work as a Family Practitioner until shifting to full time Palliative Care in 2003 - still in rural Kentucky. She is a multi-instrumentalist wannabe and enjoys many outdoor endeavors.

Image credit: CDC

Monday, October 20, 2014 by Pallimed Editor ·

Friday, October 17, 2014

5 Necessary Traits for Palliative Care Social Workers

In discussions with palliative care social workers, there is a sense that we are afforded somewhat unique opportunities in medical social work. Although we work closely with other social workers in the medical setting, we have a different relationship both with patients and families and with other medical teammates. There are many traits that the palliative social worker needs to be able to demonstrate in order to be effective in his or her role. Here are five of those:

1. A learner’s mind. As medical social workers, we are well served if we continue our learning beyond the classroom and into palliative care practice. We need to be able to synthesize medical knowledge and connect it to our social work skills. We also need to be able to translate this “foreign language” into lay-speak. In palliative care, this includes relaying disease course, coaching patients through scary internet searches, and guiding families through uncomfortable conversations, like telling someone that their son might not die for a few days after the breathing tube comes out.

2. Flexibility. We need an ability to learn about various psychosocial interventions and how they can be creatively applied to the palliative care population. We need to know how the mind and body interact and need to flex how we apply this information to patients and families exhibiting signs of stress. We also need to be flexible with the tools in our toolbox. If something isn’t working, we need to be prepared to switch strategies at a moment’s notice.

3. An ability to change masks. We need to be both gentle and direct with our patients and families based on their needs in the moment. This involves building trust in a short amount of time and being honest throughout interactions. Within our organizations, we need to be able to move between the bureaucratic world and the world of medicine, all while keeping our clients’ best interests in mind.

4. Selfishness. We need to be able to attend to our own self-care and create balance in our lives. We are great at coaching and supporting others through their moments of crisis, but we must also attend to ourselves in order to sustain our health and practice what we preach.

5. A voice. It is a given that we need to advocate for our patients and families. However, we also need to speak up for ourselves to prove our worth and value to the team and other practitioners. We need to be leaders in our organizations, not just in social work, and we need to ask for more than just leadership tasks. We all have graduate degrees, and many of us are licensed and hold advanced certification in the field.

If you are a palliative care social worker (or want to become one), how can you cultivate these traits?

• Connect. You do not practice in a vacuum so see what other social workers in the field are doing. Utilize resources such as the Social Worker’s in Hospice and Palliative Care Network (SWHPN) or listservs such as SW-PALL-EOL.

• Reach out. Ask questions of the group or of individuals.  Look back in archives to see what has been talked about before and who might be a good contact for you on a specific topic.

• Stay current. Keep up with articles in and around the field. We have a great journal in the Journal of Social Work in End of Life and Palliative Care, but there are other journals out there that are relevant, so expand your parameters.

• Seek supervision. Who else in your community/practice/organization can share their experience with you and help you reflect on your interactions? I think you’ll find that palliative care social workers are a helpful bunch and most of us want to raise the bar on the field, not raise ourselves above it.

If you are looking for a palliative social worker, what are some questions you can ask about these traits?

• How do you stay current in your field?
• What is a creative intervention that you have used or would like to try?
• How do you build trust with your clients?
• What do you do for self-care?
• How will you be a leader on this team?

Another way to ask about these traits might be to present a case example and ask the social worker how he or she might demonstrate these traits with this patient or in this circumstance.

Overall, your questions for the social worker should seek to challenge the social worker to think on his or her toes just as this person would in practice.

In the end, whether you are looking to be the best social worker you can be or find the best social worker you can find, the field of palliative care is one that is filled with creative energy and poised for advances. Palliative social workers are in a position to enhance both the palliative care and social work fields through their key roles on interdisciplinary teams. These traits can serve as a place to start that creative drive and push our skills beyond the basics.

Allie Shukraft, MAT, MSW is a pediatric palliative care social worker in Charlotte, NC where she loves reading and walking with her dogs. Although she is still learning how to use it, you can find her on Twitter (@alifrumcally).

Friday, October 17, 2014 by Allie Shukraft ·

Tuesday, October 14, 2014

Palliative Care Review of NIH's Opioid Webinar "Pathways To Prevention"



(Please welcome Sydney Dy, a palliative care physician who took great notes for a recent NIH web conference on opioid management. She shared those notes with her team, and in a great example of sharing medical knowledge more freely adapted them for Pallimed. -Ed.)

Years ago, when the local home hospice we worked with at the time supported physician home visits, I did an urgent visit on a Saturday night for a dying patient in a lot of pain with no medications in the home. I remember thinking how helpful the nice-looking young-adult grandchildren were with asking questions about what the concentrated morphine was that I obtained for them and how to use it. Unfortunately, I was unpleasantly surprised the next day to get a call that the patient needed another prescription for morphine... because those nice-looking, helpful grandchildren had used the first prescription for their own purposes that Saturday night.

Now that I've worked in palliative care in a cancer center for many years, I've become more and more aware of patients on chronic opioids - either on these medications for back pain or other issues before they come to us with their cancer, or patients who end up on them chronically after their cancer is treated - who clearly seem to be having more problems from the opioids than being helped by them - and often end up taking them in other ways than prescribed. Personally, I have learned to be far more cautious with opioid use and set expectations that we're going to get patients off of them when we are using them as short-term solutions, and we spend a lot of time getting patients off of opioids or dealing with opioid issues in our clinic. Clearly, opioids are an incredibly important tool for pain in palliative care - but they also have tremendous risks and burdens for our patients that we need to continually consider in our prescribing, and we need to be able to deal with these issues as palliative care clinicians, especially in the outpatient setting.

I was therefore very interested in the recent conference on Sept 29-30, "Pathways to Prevention - The Role of Opioids in the Treatment of Chronic Pain", which included a systematic review of the literature on this topic and presenters by many experts in the field, including Russ Portenoy.
The program book is at 
And the archived webcast is at

I would encourage anyone who prescribes opioids to listen to at least a little of this conference - in particular, I thought these presentations were very relevant to our specialty:

Jane Ballantyne
Russell Portenoy
Edward Covington
Nathaniel Katz
Steven D. Passik, Ph.D.


Here is a brief summary and some key points that I took away.

There is very little new helpful high-quality evidence that has been generated over the past decade on this issue, and many of the important issues will not be addressed in clinical trials. For areas where there is some evidence (e.g., risk of addiction with long-term opioid use), evidence is conflicting and studies are often short-term; long-term evidence is unlikely. Regardless, evidence is accumulating on the long-term risks and safety issues with opioids, both for patients and for those that end up getting the opioids from patients for whom opioids were legitimately prescribed; and many patients clearly do not seem to be benefiting from long-term opioids but end up being maintained on them because of the difficulty of getting them off and lack of available alternatives in most places in the US. In addition, most patients do not get adequate risk assessment and monitoring while on long-term opioids - these resources are rarely available and it is very time-consuming - and risk assessment before starting opioids is not very reliable. 

Chronic opioid use - 

There is a fine line (or perhaps a continuum, and significant overlap) between dependence, tolerance and addiction - (Jane Ballantyne gave a great discussion of this)
Very cautious about any chronic opioid use & lots of expert opinion (if not data, although we may never have this data) that it doesn't work for the majority of patients ... that we are often escalating opioids without necessarily giving patients value, other than having them feel that we are doing something. Clearly there are some patients who do very well and are helped by long-term opioids, but the challenge is that there are many patients who aren't and it is difficult to predict who will - and for patients who don't benefit, it's very challenging to discontinue.
If we do use them  - this requires very close monitoring, use mainly of long-term opioids. We should not expect anyone to manage a prescription of hundreds of pills. I am always reminded that most abuse happens with short-term opioids and that it is much easier to get into difficulty with them, and much more difficult for us to control as providers.

Safety with opioids - 

Be very cautious with co-prescribing with benzodiazepines! Major cause of death/ comorbidity. (This is a major issue in our cancer population where patients are often given these medications)

- It's easy for patients to take too much opioid - easy to forget that they had just taken a dose or just to take some extra medication when they are not feeling well.
Opioid risk assessment should be done before starting for any prolonged period of time, for everyone - note that this is challenging and often does not work, and so risk assessment should be continued.
Naloxone is becoming available more widely as an option to give to patients receiving opioids for pain -  there was positive discussion about this option and that its availability raises the importance of discuss opioid safety more with patients as well

Coming off of opioids - 

Need for research on tapering off - there is very little on how best to do this and what is helpful.
Patients will often have issues of fatigue, depressed emotional state for a prolonged time after coming off opioids
Many patients with substance abuse (and many on long-term opioids) have high pain scores

Other key issues - 
Headaches, low back pain, fibromyalgia should not be treated chronically with opioids (a new position statement from the American Academy of Neurology states the risks outweighs the benefits - http://www.neurology.org/content/83/14/1277.full)
Intermediate-term opioid use (intended for a few weeks or months) should be carefully managed as well - it is easy for this to turn into long-term opioid use without careful monitoring.
There's not as much of a difference between cancer pain and non-cancer pain as those of us who work solely in cancer would like to believe. Also - what is defined as "cancer pain"? In many studies - survivors and patients with chronic cancer issues are included along with patients with advanced disease - (Russ Portenoy)
 If we're prescribing opioids, at all - or recommending their use, or teaching about them - we need, as palliative care physicians, to be aware of these issues and have some education in chronic pain and addiction medicine.

If anyone else listened/ does listen to part of this conference, or has read some of the articles and guidelines on these issues, or has thoughts from your practice - appreciate hearing about them, especially if you have different opinions! 

Sydney Morss Dy, MD, MSc is Physician Leader, Harry J. Duffey Pain and Palliative Care Program, Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, where she has had the great good fortune to work closely for many years with clinical pharmacists, pain specialists, social workers, and a psychiatric liaison nurse, who have taught her much about pain management and the use of opioids.

Tuesday, October 14, 2014 by Pallimed Editor ·

Saturday, October 11, 2014

International Congress on Palliative Care 2014 review - Dementia, Ars Moriendi and inspiration


The International Congress on Palliative Care has been a treasured occasion for me during my career in palliative medicine. I’ve been able to attend the event held every 2 years in Montreal 4 times in the past 12 years, generally at times of transition. The 1st time I attended was during the 3rd year of my family medicine residency, shortly after I had learned that palliative medicine was a career option and I was considering pursuing a fellowship. While there, I spent time with the doctors who would become my fellowship teachers and later my colleagues in a setting that supported my sense that this was a field that would foster my love of looking at the psychological and spiritual as well as physical aspects of the patient, family and community. Since then, I have attended 2 other congresses while between jobs, first when I shifted from hospital consults to full time hospice work, and this time as I move to the VA hospital. The Congress once again gave me both “brain food” and “soul food” to help me in this time of change, giving me the chance to listen to many whom I respect, including Bal Mount, Betty Ferrell, Mary Lynn McPherson and Ken Doka.

There is often a word that bubbles to the surface over the course of the week. For me, this year, the word is “accompanying”. The question raised over and over in the week, using a phrase of Mary Oliver’s, “How do we accompany our fellow humans in this one fragile and wild life?’ This was most clearly discussed during a plenary session by the French sociologist, Tanguy Chantel, author of Vivants jusqu'à la mort: Accompagner la souffrance spirituelle en fin de vie. (Living Until Death: Accompanying the spiritual suffering at the end of life). This one time tax lawyer described finding meaning in his volunteering with patients in palliative care, which then made it difficult for him to continue being satisfied in his day job, leading to a change in vocation. He raised the concern that medical providers have changed the often recited phrase from “cure sometimes, relieve often and comfort always” to “cure almost always, relieve often and comfort if we have the time.” He discussed the shift towards the worshipping of the cult of performance that values goals and projects over relationships and focuses the adaptation of the person to the goal rather than the goal to the person. He encouraged palliative medicine to stay on the margins (where our willingness to discuss mortality will keep us) as an avante-gard subversion of the cult of performance. He encouraged us to be vigilant, constructive, convincing, ambitious and audacious in our giving voice to the power of presence, of accompaniment. I only wish his book was translated into English.

In Montreal, there were several talks related to need needs of growing numbers of people with dementia. Nicole Poirier present a plenary session describing her project, Carpe Diem-Alzheimer’s Resource Center. She described opening her family home for people with dementia to stay, living in community with others who learn to see what they have to give to their relationship rather than focusing on their limitations, in some ways echoing the L’Arch communities and Jena Vanier. 

Looking for the strengths of those with dementia was also echoed in the pre-conference planned by Tom Hutchinson on “Whole Person Care for Persons with Cognitive Impairment. In that workshop, John McFadden talked about the Purple Angel, a symbol used to indicate dementia friendly communities, rather than having the diagnosis lead to isolation for the patient and family. ( Susan McFadden’s asked the question of why we describe the patient with Alzheimer’s as either living in the community or in a facility, as if the facility isn’t still in the community. John also voiced his frustration of the more effective psychosocial interventions for agitated patients being called the non-pharmacologic interventions, as if the drugs were the 1st line of treatment. He encouraged calling risperidone and related medications the non-psycho-social interventions instead.

On the last day of the Congress, one of the plenary speakers was Carlo Leget, a theologian from Utrecht, the Netherlands, who spoke on “the Ars Moriendi Tradition: Looking Back to Move Forward”. I learned about the Ars Moriendi tradition through the Anamcara Project of the Sacred Art of Living Center. The Center works to help facilitate the development of interested people in the art of spiritual care of people at the end of life. Similar to similar programs such as the Metta Institute and Upaya Being With Dying program, focusing on self-reflection to help us understand our role as wounded healers preparing to be present to the joy and suffering of the other. It uses a Celtic frame of training people to be the soul friend of a person reaching the end of life, developed by Richard and Mary Groves and John O’Donohue. Richard talks about the ancient monastic tradition which was lost with the Inquisition and the burning of books including those describing the art of comforting those who are suffering at the end of life. Leget describes 5 questions that often come to mind in the setting of a serious illness that were addressed in the Ars Moriendi. 1. Who am I and what do I really want? 2. How do I deal with suffering? 3. How can I let go of this life? 4. How do I look back at my life? 5. What can I hope for now. This final question has led to research on hope, including this article on whether hope should be truthful, helpful or valuable.

In my time at this congress, I talked with not only physicians and nurses, but sociologists, ethicists, chaplains and grief counselors who work together to provide that sacred place where the person with an advance progressing illness can look at these questions. I appreciated his and numerous other presenters in their encouragement of our ongoing work of deepening our ability to be present to those with whom we are privileged to work. They echoed the phrase often used by Richard Groves that no matter what else we offer, much of the time “we are the medicine”. Coming away from this week, I feel more grounded, ready to accompany a new group of people, this time veterans, in this “one wild and precious life”.

To read some of the tweets giving highlights of talks from those attending the Congress, look up the hashtag #palcarecongress.



KJ Williams is a palliative care physician currently living and working in Madison, WI.  She is greatly influenced by those who look at how we learn to be wounded healers.  When not working, you can find her seeking out great music to listen to or to be part of creating.

Saturday, October 11, 2014 by Pallimed Editor ·

Friday, October 10, 2014

IASP 15th World Congress on Pain - Is this a meeting for palliative people?

(Please give a warm welcome to Mary Lynn McPherson, our first pharmacist writer here at Pallimed. Many of you may know her from her fantastic data filled and data driven talks on palliative medications. We're glad she is sharing her report from the 15th IASP conference! -Ed.)

The International Association for the Study of Pain (IASP) is holding its 15th World Congress of Pain meeting as I write, in Buenos Aires, Argentina. Is this a meeting for palliative care practitioners? The IASP mission is as follows: “IASP brings together scientists, clinicians, health care providers, and policy makers to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide.” I can say after several days in attendance that they live up on this promise – there’s a little something for everyone! Today must have been neuropathic pain day because there were several outstanding presentations.

Dr. Nadine Attal presented “Neuropathic Pain: Where Are We With Our Drug Treatments and Algorithms?” She confirmed that first line options remain anticonvulsants such as pregabalin/gabapentin, and antidepressants (TCAs and SNRIs). She went on to explain however that she and her associates (IASP NeuPSIG) have completed a recent analysis of the literature, including unpublished data showing that the number of needed to treat, even with these first line options, may be higher than we realize. This analysis has been submitted for publication consideration. Dr. Attal hypothesized, and presented data to substantiate, that the future of optimal neuropathic pain treatment may be mechanism-based treatment (e.g., differentiating between burning, evoked, paroxysmal, pressing pain, etc.).

At the end of the day Drs. Dickenson, Gilron and Jensen presented “Combination Therapy for Neuropathic and Other Chronic Pain Conditions: Similarities, Differences and Therapeutic Opportunities.” Several studies have been published in recent years showing a combination of two drugs to treat neuropathic pain is superior to either drug alone, and result in less toxicity. The holy grail is when Drug A + Drug B is more efficacious than Drug A alone or Drug B alone, but no additional toxicity is seen. A good example is the study by Gilron et al. that showed nortriptyline plus gabapentin was more effective than either drug alone in treating painful diabetic neuropathy or postherpetic neuralgia. A more recent study assessed a unique titration strategy comparing duloxetine vs. pregabalin vs. the combination in the management of peripheral diabetic neuropathy that was no longer responsive to gabapentin. The results showed either drug alone and the combination had equivalent outcomes, although Dr. Gilron stated secondary outcome analyses showed a trend toward favoring the combination. Dr. Gilron concluded that that not all combinations have shown favorable outcomes, but that this line of research is intriguing and bears continued scrutiny.

But the big winner for me personally today, was the debate between Drs. Mark Ware and Andrew Rice titled “Cannabis for Neuropathic Pain: Debating the Merits of Cannabis as Medicine.” Sadly, both faculty members are true gentlemen with amazing elocution, so it wasn’t a knock-down, drag-out type of debate! Both debaters agreed that the preclinical data (animal studies) with cannabis are very promising. Dr. Ware argued that we have sufficient proof of concept data to warrant considering cannabis as a second or third line option, and the use of a vaporizer removes the concern about smoking cannabis. Dr. Rice wasn’t quite as excited about the clinical data, but he was especially concerned about the long-term effects of cannabis – namely, psychosis, which has an odds ratio of almost 3 of developing with continued use of cannabis. Dr. Rice pointed out that the above-mentioned guidelines recommended by the IASP NeuPSIG submitted for publication consideration provided a “weak recommendation against the use of cannabis in neuropathic pain on the grounds of generally negative results and potential safety concerns.” By no means down for the count, Dr. Ware’s rebuttal was crisp and decisive – cannabis is not a first line recommendation – it’s for severe, refractory neuropathic pain. He argued that this is the “art” part of practicing medicine – selecting patients for whom the benefits will hopefully exceed the burdens of therapy. Dr. Rice’s come-back was a reiteration of the long-term risks. The enthusiastic audience was STILL torn between “yea,” “nay” and “I got nothin!” My thoughts are that I agree cannabis isn’t first line, and yes, I’m worried about the psychosis and cognitive decline in a population who either already have this as a comorbidity, or are at risk to develop such. But I’m not particularly worried about the long term threat of this complication – in hospice our median length of stay is under three weeks. As with all drug therapy decisions, a benefit/burden analysis must be considered before using any medication, including cannabis.

So, yes, I think there is a little something for everyone at the IASP World Congress on Pain. And let’s not forget the obvious – they hold their meetings in really cool places! Two years ago was Milan, Italy, the current meeting in Buenos Aires, Argentina, and in two years get ready for that LONG plane ride to Yokohama, Japan!

Mary Lynn McPherson, Pharm.D., BCPS, CPE is Professor and Vice Chair of the the Department of Pharmacy Practice and Science at the University of Maryland School of Pharmacy. 

Friday, October 10, 2014 by Pallimed Editor ·

Thursday, October 9, 2014

Grey's Anatomy Docs Discuss Code Status

For those of us who live, breathe, and get the tingle of excitement talking about advance directives, last Thursday's Grey's Anatomy (Episode 1102 - "Puzzle with a Missing Piece") provided for many rewinds as it became apparent that "the forms" were going to be discussed in primetime TV.  If you're anything like me, your blood pressure rose slightly, a wave of excitement came over you, and you sat on the edge of your seat wondering if they were going to describe the necessity, use, and function of advance directives correctly.

So, what was the outcome? Did Dr. Pierce properly explain to family, the residents, and other physicians, the need and utilization of a "DNR" as the situation unfolded Thursday night?  While those of us immersed in the POLST world shuddered slightly when Dr. Pierce referenced a DNR, instead of the POLST (or MOLST) as is proper in the majority of states, it was equally enlightening to hear advance directive forms being referenced at all in a primetime show.  While maybe not the exact way those of us in the end-of-life arena may have addressed the situation, we all have to admit, anytime a TV show takes on a topic, such as deciding between life and death, it is a win-win for all of us involved.  It's just one more instance, or 30 seconds, or five minutes, that can put an idea in an individual or family members head to have "the conversation" and hopefully get their end-of-life plans in order.

The mother, Marjorie, expressed in the episode, she did not want to be resuscitated should the situation presented itself again.  She had endured fractured ribs from a previous CPR attempt and simply was at her end.  The daughter wished to have her mother in her life for a bit longer. Who is right? Who should those in the medical profession listen to?  The mom who clearly has decisional capacity for herself? Or the daughter who just wants mom to be with her a bit longer? We know the answer is mom, although even though we know what the answer is … the lines sometimes become blurred … or gray.

For the mother on Grey's Anatomy, she was coded, for a second time, when the daughter was out of the room.  While the initial physician in the room, Dr. Meredith Grey, aggressively performed CPR, the treating physician, Dr. Pierce, whom the mother shared her wishes and thoughts with, appeared in the room. Dr. Pierce insisted that Dr. Grey allow her to take over CPR. The mother passed, as peacefully as she could, while Dr. Pierce performed CPR.

Death is not an easy conversation for anyone.  It becomes more challenging, and emotional, when the need is imminent.  The more media coverage ,through either news or entertainment, can address these issues, the higer possibility more people will began having these critical conversations. It is immersing these conversations into our communities which are so vitally important.

Thanks Grey's Anatomy. We look forward to you addressing this topic again.

Ronette Leal McCarthy is Legal Counsel for Elements, the cremation company and is by active on Twitter (@LealMcarthy) supporting end-of-life issues. Which is how this story came about, when Christian Sinclair saw her live-tweeting about this episode!

Thursday, October 9, 2014 by Pallimed Editor ·

Wednesday, October 8, 2014

World Hospice and Palliative Care Day - October 11, 2014

World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world.
World Hospice and Palliative Care Day is organised by a committee of the Worldwide Palliative Care Alliance, a network of hospice and palliative care national and regional organisations that support the development of hospice and palliative care worldwide. The day is facilitated by Hospice UK, the national charity for hospices.
The aims of World Hospice and Palliative Care day are:
  • To share our vision to increase the availability of hospice and palliative care throughout the world by creating opportunities to speak out about the issues
  • To raise awareness and understanding of the needs – medical, social, practical, spiritual – of people living with a life limiting illness and their families
  • To raise funds to support and develop hospice and palliative care services around the world

The theme for World Hospice and Palliative Care Day which will take place on October 11 is 'Achieving universal coverage of palliative care: Who cares? We do!' 
We will be talking about World Hospice and Palliative Care Day this evening, Wednesday October 8 during the weekly #hpm chat on Twitter at 9p ET/6p PT. We hope you will come join us! 

- Jim Cleary, MD - @jfclearywisc

Topics:
T1: How do you see the role of World #hospice and #palliativecare Day in your state/country/region? Any?

T2: Thoughts on the theme “Achieving universal coverage of palliative care! Who cares? We do” for 2014

T3: So what do you have planned for #world #Hospice and #Palliativeday in your country/region in 2014?

T4; What would you like to see more of or what opportunities do you see for world #Hospice and #Palliativecare day

Dr. Jim Cleary is Associate Professor of Medicine, Medical Oncology Section; Director of Palliative Medicine at UW Hospital and Clinics and a strong advocate in voice and action for palliative care on the global stage. Occasionally he lives in Wisconsin, when he isn't traveling the world supporting world wide palliative care efforts. He is also the founder of the weekly #hpmglobal chat. 

Wednesday, October 8, 2014 by Pallimed Editor ·

Pallimed | Blogger Template adapted from Mash2 by Bloggermint