Annual Assembly

After the Bad News… When Patients Hear Something Different than What Was Said

How many times have you begun a conversation with a patient or family, only to discover their understanding of the situation is far different from what the referring physician has shared with you?

All too often, it seems, judging from the large attendance at this informative, lively session that led attendees through the labyrinth of difficult, high stakes conversations. The role-play exercise—a PC consult with a determined mother of teens who believes she’s discharging to rehab to “get stronger for chemo” — stimulated a discussion that identified techniques, pitfalls, and ethical boundaries.

The take-away of techniques included three communication approaches: offering a hypothetical situation (have you thought about what you’d want if the chemo isn’t effective?), offering hope/worry language (I’m hoping you’ll feel better and be able to go home to spend time with your family, but I’m worried that your body is very sick, and this might not be possible) and naming the dilemma.

Some techniques to avoid common pitfalls included communication with the team after to conversation to ensure a common message and reduce team distress, and avoiding splitting, even bringing the referring physician to the meeting, if possible.

The concept of planting a seed—taking the conversation only as far as the patient appears able—emerged as we explored the ethical boundaries of sharing unwanted news, weighed with our duties to the patient and family to provide accurate information to empower informed decision making.

While we recognize that some patients and families may stay “stuck,” the goal of these conversations, and indeed all care, is to maximize the chances for better outcomes. Thank you Drs Jacobson, Thomas & Jackson for an enlightening session.

Karen Whitley Bell, RN, CHPN

NEUROTOXICANTS: Unmasking Uncommon Syndromes (333)

This lecture was very informative and was well attended.

To summarize the meeting and the clinical pearls:


Pharmaceutical neurotoxicant

drug or drug-like entities due to its own properties or in combination with other drug or drug-like entities illicit an untoward response to its host’s nervous system

  • Many drugs used in hospice/palliative care have potential side effects. Often we are using polypharmacy and the sum of the parts can lead to neurologic syndromes. Minimize drugs used. Ask yourself: is this drug needed? is it likely to cause side effects? Is there something that we can stop if we start this drug?
  • The symptoms of Serotonin syndrome, Anticholinergic syndrome and Neuroleptic syndrome can be vague, and the clinical syndrome is usually missed. Only in the extreme cases is the diagnosis obvious. Clinicians are not well versed in the neurologic syndromes so they are often missed. There is overlap between the three syndromes.
  • Symptoms of restlessness or agitation are treated with medications such as haldol that are meant to reduce these symptoms. Often increasing or adding new medications worsen symptoms which usually leads to increasing medications. This lecture helped to point out that some of the worsening symptoms are medication related and tapering off the medication is the appropriate next step.
  • Elevated temperature is not always infection. In both NMS and Serotonin syndrome it can be side effect of drugs
  • Myoclonus is not always related to opioid toxicity
  • Careful examination to include pupillary size and reflex response can help differentiate between syndromes

Summary of the syndromes in the table below (hope it opens – I’m new at this)

table for neurotoxicants

Overall it was a good lecture that made the participants aware that these syndromes exist, that the medications we use in hospice and palliative care are often the culprits and without high level of suspicion the syndromes are missed.

A Whirlwind Tour of Pharmacology for Symptom Mangement in Pediatric Patients

Today at the AAHPM Assembly, I had the opportunity to attend a much-needed session on pharmacology for symptom management in pediatric patients. Sponsored by the Pediatric Special Interest Group, this “whirlwind tour” covered pharmacologic approaches to depression, anxiety, delirium and insomnia in children. The three presenters from San Diego Hospice – a palliative care physician, a child psychiatrist and a pharmacist – effectively used video and powerpoint to get a lot of important points across quickly. While a bit more attention could have been paid to time management, this was an important session that could easily have been 2 hours in length, and the presenters definitely conveyed the main points in a clear and easy-to-follow fashion.

In pediatrics, we suffer from a practice gap in that there remains such a dearth in evidence-based research for much of our clinical practice. So we rely on anecdotal evidence, or fly by the seat of our pants. It’s very helpful to have guidance and wisdom from a long-established program who have amassed a significant clinical history with pediatric patients. What was particularly informative was the data table that they put together and freely shared, listing all of their recommended pharmacologic choices for each symptom, along with mechanism of action, dosing guidelines, absorption/metabolism/excretion information, common adverse events, and specific clinical pearls about their use. The table also included an algorithm specifying first and second-line choices for each symptom.

One of the many great things about the pediatric palliative care community is the unselfish sharing that we do – as exemplified by the resources offered at today’s presentation. At a national level, we’re currently working on ways to store and share important and widespread information that would benefit everyone, including clinical pathways/protocols, seminal presentations, program development tools, policies/guidelines, and bibliographies. Stay tuned to the AAHPM SIG webpage for updates as to how this information will be made available!

New Drugs and Drug News – The 411 and implications for palliative care (334)

This session could also be known as: a whirlwind journey through 2010 pharmacology with Mary Lynn McPherson, Pharm.D., BCPS, CPE from the University of MD. She is a very entertaining and engaging speaker, also very quick! She reviewed the FDA decision to remove propoxyphene from the market, which has been highlighted in other blogs as well. She discussed the FDA concerns and restrictions regarding acetominophen in common opiod formulations. In addition, I didn’t know there was an official definition of opiod tolerance – any one of the below:

  • 60 mg oral morphine per day
  • 25 mcg TDF every three days
  • 30 mg oral oxycodone per day
  • 8 mg oral hydromorphone per day
  • 25 mg oral oxymorphone per day

Several highlights to remember:

  • Many new and very expensive drugs on the market taking advantage of alternative delivery systems
  • Nuedexta (dextromethorphan/Quinidine) for uncontrolled laughing/crying in neurological diseases. Helpful but over $600/month
  • Abstral (SL Fentanyl) available. Extensive REMS (Risk Evaluation and Mitigation Strategies – FDA) which will include special certification for providers as well as pharmacies.
  • Exalgo – a once daily hydromorphone formulation
  • BuTrans – transdermal buprenorphine which can be worn for 7 days for pain relief
  • OxyContin reformulation – designed to prevent abuse, many patients feel it isn’t as effective.
  • Duloxetine (Cymbalta) – indication for chronic musculoskeletal pain (low back pain, etc)
  • Acetaminophen IV (Ofirmev) available – long awaited by many (including me!). Will be over $10 per dose, compared to pennies for other routes of administration. Will still be huge blockbuster!
  • Cryostat – a very effective cold pack for hemorrhoid relief

Overall, LOTS of information in a great presentation. I was only sorry it was at the end of the day (I feel much sharper earlier in the day!).

Would be curious if anyone else picked up other tips that might be helpful – please share in comments.

Hospice medical director course

half way through the Pre-con. Some good nuggets for experienced directors, but most will know most. Q+A great

Eating Out and Activities in Vancouver

AAHPM and HPNA members and staff are getting excited for the 2011 Annual Assembly in beautiful Vancouver. As you may remember, last year, we posted our favorite dining out spots in Boston. Now we would like to know, those of you from or who have visited Vancouver, what do you recommend? Leave a comment and share some tips.

Thanks, and we look forward to seeing you there!

HPNA/AAHPM Collaboration for Annual Assembly

For the past 6 years, AAHPM and HPNA have collaborated to provide an annual conference for members of the interdisciplinary team. As we would expect, the outcomes have improved annually. Last year’s conference in Boston, recorded the highest attendance, the most satisfied attendees and highest rating for presenters.

Is it possible to improve? With any process, there are always opportunities to improve. This year’s conference committee co-chairs and more than 60 volunteer committee members have been committed to raise the bar even higher. HPNA will be kicking off a year-long celebration of their 25th Anniversary with many specialty events so we encourage you to come see, enjoy, network and grow professionally. While there, ask about the Hospice and Palliative Nurses Foundation walk-a-thon. It is a great way to exercise and support grants, scholarships and awards in research and education. See you in Vancouver, B.C. – remember your passport!!

Assembly Recap at a Glance…

In a matter of one week, the John B. Hynes Convention Center in Boston transformed from a few rolled up carpets, posters, and chairs to a convention center full of energy, information, and more than 2,400 hospice and palliative medicine professionals. Tweets using the #AAHPM or #HPMAssembly hash tag numbered at 834, AAHPM’s blog team posted 28 blog posts during the Assembly, and the blog received views from 37 states and 10 countries. In addition to the many outstanding educational sessions, this year’s meeting featured a number of new programs, including a book club, medical & nursing student forum, and additional initiatives to be green. Please enjoy the following photos from AAHPM’s largest Annual Assembly yet. Click on the photo to enlarge.

We’re thankful for all of you who attended and contributed to the success of the meeting, and we look forward to planning an exciting 2011 meeting in Vancouver, Canada!

The AAHPM Resource Center, ready for opening reception attendees Wednesday!

New members and board members alike socialized Wednesday during the New Member Reception

President Elect Ron Crossno proudly marks his connection from Texas to Boston

About 30-35 medical students had the opportunity to learn about the field from HPM leaders during the first-ever medical student forum on Saturday

Outgoing President Gail Austin Cooney addresses plenary attendees Saturday morning

Many thanks go out to the AAHPM & HPNA Program Chairs, Daniel Fischberg (left) and Patrick Coyne (right).

More than 120 people attended a book club session Saturday to discuss the implications of Drew Faust's This Republic of Suffering in their practice.

Thanks for a great time in Boston. We'll see you next year in Vancouver!

Weaving Connections

After a busy conference schedule it was wonderful to walk in to the Weaving Connections – Service of Remembrance & Celebration and be greeted by the wonderful music of Trillium. Trillium is a group of volunteer singers from Vermont who harmonize their hearts for patients in their homes, hospitals and nursing homes. I was so moved by their voices, that I was reminded of one of my favorite quotes that is prominently displayed in the home of my mother in law which simply states, “Singing is like praying twice.”

The gathering, as shared by Dr. Christina Puchalski who personally had several losses this past month, reminded her about how the sharing of our losses together by our community allows them to help restore our balance and give us a place to heal as we mourn. Remembering and sharing in our communities helps to weave the compassion and return some wholeness to the empty voids of pain when we experience loss. The community helps hold us while we grieve and they help us to remember the gifts we have received from our loves ones or patients in the celebrations and stories we share.

Dr. Rachel Naomi Remen who I felt honored to be in her presence quietly and with great love and compassion shared with us the thought that sign language is more than words, it’s a whole body experience. She then shared and taught us in sign language a small recipe e could carry with us that loving ourselves is important as well.

Trillium closed the service with a song from South Africa about Peace and their last piece called “Here Is My Home.” I think we could have listened to them all night and it was a while before people wanted to leave. The most beautiful thing I heard after the service was someone expressing the celebration filled them up again and that if you missed it, you may have missed one of the best sessions of the day. I was in total agreement. I am glad this was included in the program.

Wounded Warriors: Their Last Battle

Wounded Warrior PinningThe Hospice and Palliative Care Council of Vermont schedules an educational assembly around flag day, Mid-June, at Lake Morey Inn, near the New Hampshire border — it’s a magical place, every meeting room facing the lake a few yards away, the mountains just beyond the further shore, the meeting more dominated by music and art every year.

I was leading a poetry workshop there in 2006 just after my second book, Dying for Beginners, was published, when my cellphone vibrated with a notice that someone with a 406 area code had just left me a message. Since my mother was quite ill on hospice care and it looked like a Missoula number, just north of her home, what we have for a medical Mecca in Montana, I left the workshop participants to struggle with a knotty suggestion for the first line of the poem we were working on, and stepped out by the lake to retrieve my voicemail. It was an oddly familiar voice — but not one of my sisters, and not Dr. G, Mom’s Attending of Record. “If this is the medic who dusted off my sorry ass August 12, 1969 when I got shot in the chest, give me a call back.”

After the workshop ended I called Clark Ferrell at the number he had left. I knew who it was as soon as I heard the voice, really, my first sucking chest wound, carried out of an ambush in the tall green of Long Kanh Province on a stretcher I improvised out of a poncho and two saplings, my ears still ringing with the industrial noise of a close-in firefight. I dusted one of Clark’s stretcher-bearers Sidney Gross off from the same LZ with a grazed arm he’d hardly noticed, his second purple heart, so he would get out of the field: a million-dollar wound.

We were doing cloverleafs in Indian Country. In some ways it was like internship would be ten years later, not much sleep, weeks of boredom, moments of terror. Ironically, we killed their medic in the confusion — he was carrying a standard US-issue aidbag filled with parenteral drugs I had no idea how to use when a grunt brought it to me for my inspection…except for the morphine we had in common.

Later I tore the NVA medic’s souveniered ears off Sparkie’s dog tag chain and threw them into the river. That was the second time I lost my M-16, retrieved by the platoon sergeant who offered a .45 as less likely to be cast aside in the excitement. I can still strip and clean that pistol blindfolded, though I only fired it once in the field and by accident, almost mutilating myself .

The effects of publishing a book are unpredictable — suddenly because of the magic of the internet I was talking to Clark again, the obsessive-compulsive volunteer pointman who would never let anyone else do his job because no one else was as good at it as he was. And he was there living in Missoula, with a bedroom dug into bedrock underneath his house where no car backfire could ever find him, just seventeen miles from my mother’s house in Stevensville where I spend weeks every year, sometimes months if I’m lucky.

Siegfried Sassoon titled his most anthologized antiwar poem “Dolce et Decorum est, pro Patria Mori,” referring to that Latin tag later as “the old lie.” It is not “sweet and decorous to die for one’s country,” but as long as we believe that, as long as we believe that those who fight this country’s battles are heroes “preserving our freedoms,” wars will continue to cut down the young, leaving the old, standing, mouthing platitudes.

It was hard for me to define exactly what about Glassman’s plenary made me uneasy while I was listening to it with tears behind my eyes. The amplified Hueys on her soundtrack were part of the stimulus for my tears — sweet and scary.

Of course I wanted to be welcomed home when I returned from Vietnam, and of course I got rid of my dress greens with their three rows of medals as soon as I could find a Goodwill that would take them, tired of being confronted as “baby killer, mercenary.” In some sense I was a baby killer and a mercenary — but I was your baby killer, your mercenary, doing your work. If you weren’t protesting, if you weren’t in jail as a draft resistor, you were implicated.

Pretending I was a hero and I fought on the “right” side as far as history is concerned will only make the next war more likely. When I am dying don’t call me a hero, don’t tell me you are grateful that I fought “for your freedom.” That lie will only be another injury. I fought on the wrong side in the wrong war, and my dead friends did die in vain except as they died for me; and that is cold comfort, because part of me died with them anyway. The best we thought would come out of that war was less likelihood of more wars and more young deaths. It had nothing to do with freedom and everything to do with pride and wealth…and blindness. When Morley Safer interviewed my platoon with a firefight raging photogenically in the background, asking the non-open-ended question “what do you think of the peace riots back home?” Morehead Sam answered “if they’s rioting for peace, they’s my men.” He was speaking for us, but his answer never appeared on your television screen.

A bereavement services colleague sighed, when the Second Gulf War started, “Not another one, we’re just starting to deal with the carnage left over from Vietnam.” I am absolutely in agreement with Glassman that veterans require special consideration…but let’s not lie to them. What they went thru should put them beyond lies about heroism, and allow us to sit with their suffering, hear what they have to say about that experience without jumping to any conclusions. Calling them heroes is jumping to conclusions. Some might have been.

Let’s not pretend that war is worthwhile in any way when we are not fighting for our survival…and let’s hope that our children won’t find themselves in another Vietnam, or another Iraq…or another Afghanistan. Some are unfortunately already there. God help them.

When Glassman asked veterans to stand up near the end of her presentation I stood, albeit uneasily. One of her volunteers pinned me with a pair of gilt flags, one stars-and-stripes and a blue one with the legend “honored veteran.” She hugged me, and I wept. But I was already wearing a miniature yellow campaign ribbon banded with green at both margins, three red stripes in the center. She didn’t know what that ribbon meant, but my brothers and sisters do. After wearing it for a day to get the feel of it, I took the American flag off my lapel, the last refuge of too many scoundrels…I’ll keep wearing the Vietnam Campaign Ribbon, a more subtle message based on the flag of a country that no longer exists, where 53,000 of us died physically and more lost the lives they wanted…while 3 million Vietnamese lost their lives for nothing more than our ignorance and arrogance. Don’t tell me the Gulf Wars are an improvement: they are only evidence to me that countries have a hard time learning.

With all due respect to Glassman and the VA, I suggest that they listen to their dying veterans more carefully…and if they must decorate pillows or lapels, do so with the appropriate campaign ribbons rather than symbols of our country’s blindness, faux honor and pretended heroism. We were there and that acknowledgment is a start. The rest is our story, not yours. Listen.

Patrick Clary, MD

Medical Director, New Hampshire Palliative Care Service

USARV 1969-1970 (Combat Medical Badge, ARCOM with Oak Leaf Cluster)