Archive for March, 2010

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)

What children learn about death

I had not originally thought to attend this seminar, but my NP colleague had expressed an interest in attending this session. Mostly because some of the patients we are seeing now are younger with children and ask for how to explain death to their children. Is there a good resource?

What a great presentation of the films children see and the depiction of death. A couple of facts that were stunning to note were that in the films presented, characters mostly die by falling. Check it out,: Lion King, Snow White, Beauty and the Beast to name a couple. The music in the films also sets the tone for the film as well. The music can change the moods as we move through a movie, often not needing words at all. Remember the scene in Bambi? Go back and as your watching this, listen as well.

The presenter Marianne Matzo was playful as well as expressive in her own experiences as a child growing up and the impact these films had on her.

Many people I spoke with after her presentation shared their excitement of her presentation style which included humor, fact and film clips. It was a pleasant change from the intellectual presentations (no tomatoes please because we need them as well) and her slides were filled with color and whimsy. I would like to see a few more presentations like this in the upcoming conferences. Thanks Marianne.

State of the Science

This informative talk by Drs. Goldstein and Anderson was a well-paced informative synopsis of 8 important peer-reviewed articles and how the findings can be applied to our patients. I will refrain from citing the actual articles and authors as those can be easily found in the downloaded handouts. I will summarize take home point and offer and few thoughts.

  • Telephone follow-up for newly diagnosed advanced cancer patients with monthly group shared appointments resulted in higher QOL, lower reports of depressed mood and a trend towards lower symptom intensity.
  • Many patients with a poor prognosis report minimal or no support from the medical system of spiritual/religious needs and no pastoral care from hospital or clinic. Those who report good support are much more likely to use hospice and have better QOL at end of life. Spiritual care is a QUALITY STANDARD for palliative care.
  • Terminally ill children whose parents planned location of death were more likely to die at home, and if they did die in the hospital were less likely to die in the ICU or be intubated during last day of life. Planning may also improve parents’ experience of the death.
  • “Being a good parent” is a key factor in making decisions for terminally ill children and there are several common themes to define what “being a good parent” means. These include doing right by child, being there for child, conveying love, being an advocate for child, and being a good life example. Clinicians can support parents in “being a good parent”.
  • Functional status of elderly nursing home residents declined after the initiation of dialysis and mortality was high. 24% had died at 3 months, 41% at 6 months, and 58% at 12 months. Only 1 in 8 maintained functional status and none improved.
  • NH residents with advanced dementia with severe functional impairment, were less likely to receive potentially burdensome interventions if proxies understood that they had prognosis of 6 months or less. Pneumonia, febrile episode, and feeding problems all herald a poor prognosis. Distressing symptoms are common in this population; in this study sample referrals to hospice was only 22%.
  • Subcutaneous atropine, scopolamine and hyoscine were equally effective in treating the “death rattle”. 95% of patients in this study had cancer and exclusion criteria included respiratory infection, aspiration and pulmonary edema.
  • A small group of primary care physicians who participated in a mindfulness education program were found to have significant increase in mindfulness as well as improvement in burnout, empathy and personal well-being. It sounds like only a small number of physicians actually completed the full program.

Here are some of my random thoughts as an adult inpatient palliative care physician and I’d love to hear yours:

  • As a whole, we are really missing the mark with the provision of spiritual care.
  • I think planning location of death is important not only for children but for adults as well.
  • When caring for debilitated elderly patients facing possible dialysis, I will try to help patients/families understand prognosis with regards to functional status and mortality.
  • When caring for patients with advanced dementia, I will not assume that family members understand the natural history of the disease process, as this understanding is likely to reduce burdensome interventions.
  • I’d like to know how the death rattly study truly excluded actively dying patients if they had a respiratory infection, aspiration of pulmonary edema. How did they know for sure?
  • Completing some type of formal mindfulness training is one of my goals for 2011.

I’d welcome your thoughts…..

Healthcare Reform… Time to Act…

Healthcare Reform… TIME TO ACT!

WE (that means- you, your friends, anyone who cares about Hospic & Palliative Medicine and I) need to be involved in healthcare reform.

Doing nothing is not an option!

Questions to ponder as you peruse this Blog Entry…. (As always comments are HIGHLY encouraged…)

  1. Are you aware, many States are cutting hospice from the Medicaid budget? What’s happening in your State?
  2. Can you name the Academy’s four Advocacy Priorities? Should you care?
  3. How will the FDA/DEA/REMS affect your program’s ability to care for a dying patient?
  4. Are you ready to be an Academy Advocate?

Paul Tatum provides a fabulous summary of Diane Meier’s talk about WHY we must engage in the Healthcare reform conversation- lest be told what to do!!! Please see his blog posts for details on the “why” and “how” to get involved.

The legislative update presented by Drs. Tuch, Muir and Kollas summarized the status of healthcare reform today at the Federal and State level, the Academy’s focus for advocacy and FDA/DEA regulatory concerns specific to our field.

National Healthcare Reform Status:

  • Both the Senate and House passed Healthcare reform Bills
  • The White House is pushing for the House to pass the Senate Bill
  • Budget Reconciliation will begin with the above Bills if the House is unable to pass the Senate version
  • This will likely be a long process….

HPM and the Healthcare Reform Bills

  • Multiple provisions in each Bill and Future Bills:
    • Medicaid concurrent care provision
    • Medicare hospice concurrent care demo (Senate)
    • Hospice Payment Reform (MedPAC*, Senate)
    • National Pain Care Quality Act
    • Quality Reporting/Comparative effectiveness
    • Advance Care Planning resources (House)
    • PCTA** to be re-introduced by Senator Wyden
    • Productivity cuts affecting Medicare providers (hospice programs)

*MedPAC: Medicare Payment Advisory Commission

**PCTA: Palliative care training act

State Healthcare Concerns:

  • Many States have cut or are considering cutting Hospice Benefits from Medicaid
  • States are responsible from implementing national reform
  • Many State level initiatives to improve care-
    • POLST, Adv Dir, Sedation, IV Hydration & Nutrition
  • Continued lack of understanding of HPM

State Advocacy for HPM

Academy’s Four Focused Advocacy Areas

(Just think WARR… or come up with your own mnemonic ☺)

  • Workforce: increase the number of PC specialists
  • Access: improve patient’s ability to get PC when needed
  • Research: grants and funding focus (ex: PACA- academic achievement award)
  • Regulatory: DEA/FDA/REMS- ensure timely access to prescription medications

There are multiple sub-points under each advocacy initiative. For details on WARR :

http://www.aahpm.org/pdf/09recommendations.pdf

Regulatory- DEA.FDA.REMS (see Cameron Muir’s post below)
  • DEA is concerned about diversion and abuse
  • FDA is concerned about public safety
  • REMS Risk Evaluation Mitigation Strategy­-
    • Issues addressed surrounding:
      • Access
      • Availability
      • Approval
      • Safety

For detailed information see:

http://www.fda.gov/Drugs/DrugSafety/InformationbyDrugClass/ucm163647.htm

Now that you have the bullet points- What is YOUR role?

Advocacy… You can do this…

  • Speak with one voice –
    • Know the Academy Focus: WARR
    • If you have special concerns- speak to Academy Advocacy Staff
      • Jackie Kosinski and Steve Smith
  • Your Representatives WANT to hear from you
    • TELL YOUR STORY! And relate the story to the Academy’s target one at a time!
    • Always bring the story back to the State level…
    • Use Resources created by the Academy
  • Get involved at the State Level!
    • This is a grassroots campaign- IF Obama did it, so can we!
    • Is your State addressing Adv Dir? POLST? Artificial nutrition and hydration? Hospice cuts?
    • Public Hearings are a great way to provide expert opinion
  • Communicate your concerns to the FDA-
    • AAHPM staff will be drafting a letter for members to send regarding regulatory concerns
    • OpioidREMS@fda.hhs.gov
  • Get involved with the Academy’s Advocacy Leaders

So… back to our questions with a few more from the audience at today’s talk:

  1. Are you aware, many States are cutting hospice from the Medicaid budget? What’s happening in your State?
  2. Can you name the Academy’s four Advocacy Priorities? Should you care?
  3. How will the FDA/DEA/REMS affect your program’s ability to care for a dying patient?
  4. Are you ready to be an Academy Advocate?
  5. Is the Academy coordinating efforts with other organizations? If so- who are they and on what?
  6. Does it really matter if the States give up Hospice Medicaid benefit?
  7. Will the DEA ever lighten up on e-prescribing?
  8. What are you doing in your State or in DC to advocate for HPM?

Let’s get the conversation started……

“How wonderful it is that nobody need wait a single moment to improve the world.”-

Anne Frank

Tanya Stewart MD FAAHPM

Two competing public health crises: the undertreatment of pain AND the increase in opioid related deaths

We as hospice and palliative medicine professionals have been largely focused on the former public health crisis in our training and practice as well as research endeavors to improve pain assessment and management. The FDA has expanded authority given in 2007 to focus attention on the public saftey issues related to the significant increase in opioid related deaths. BOTH issues SHOULD be of concern to hospice and pallaitive medicine professionals. Our efforts this past year have been focused on both informing our members about the public safety concerns, while at the same time increasing the communication and collaboration with various federal agencies – particularly the FDA – regarding access, availability, and supply of a) pain management professionals, b) pain medications, and c) pharmacies that can dispense pain preseciptions. The Academy and its members must take an active role in the coming months to ensure vigorous dialog on this topic within the Academy, across other stakeholder groups, and to federal agencies. I look forward to working to facilitate this dialog in the coming weeks and months.

-Cameron Muir, MD

Calculating Financial Outcomes for Hospital Based PalCare

This was an extremely helpful session for those of us doing the number crunching for our programs. There were new ideas to help calculate the impact of different (pre- and post-palliative care intervention) hospital utilization patterns. Look for the slides on-line!

My Breakfast with the Academy Presidents

One of my favorite events during the Annual Assembly each year is breakfast with the AAHPM Presidents – past, present and future. It’s a tradition that is meaningful to all who attend, although I suspect the reasons vary among the group. For our incoming president, Sean Morrison, this informal “coffee talk” provides an opportunity to gain information and perspective. For our current president, Gail Cooney, whose term ends later today, it is a time of transition when support and collegiality offers a glimpse of what life after years of ascension and heavy engagement in “all things AAHPM” looks like. For our past presidents it is a time to reconnect and reflect about past accomplishments, continuing challenges and their ongoing leadership journey. For Executive VP Porter Storey and I it is a time to honor the past and hear ideas about the future.

AAHPM Presidents' Breakfast

What is the role of a past president? To be honest, many professional societies haven’t quite figured this out. Too often past presidents are treated as if they have “retired” even though nearly all remain interested, willing, and able to stay engaged. Consider for a moment the depth of experience and knowledge these individuals have accumulated through their years of involvement in AAHPM. They have spent hundreds (probably thousands) of hours serving in special interest groups, task forces, and committees; participating in strategic planning, budgeting, board development, external relationship building, and advocacy; navigating complex issues where diplomacy and exceptional leadership, resulting in tremendous advancement of our Academy and the broader field.

This amazing amount of volunteer time and talent is truly “a gift” to our Academy. It requires tremendous dedication and balance amid lives that are already overloaded with numerous personal and professional commitments. The wealth of experience and insights these leaders bring to the presidential breakfast table is powerful and awe inspiring. They smile, laugh, and engage in thoughtful discussion. They see and appreciate how their efforts through the years have made a difference.

So while it’s nice to appreciate and recognize our AAHPM presidents for what they accomplished in the past, it is even more critical to keep them connected to what we are doing today. And although our annual breakfast truly is a “breakfast of champions,” it also symbolizes the ongoing engagement, enthusiasm, and support our past presidents continue to offer through their involvement as senior advisors to current committees, mentors to junior faculty, contributors to new products and programs, and in so many other ways throughout the year.

There is no “pasture” for past presidents—at least not one at on the AAHPM farm (-:

—Steve Smith, Executive Director/CEO, AAHPM

Long-Term Illness Discussion Inspires

Dr Periyakoil initially gave us the choice of either listening to her lecture, or of having her lead a group discussion. The group opted for the lecture but as it ended we were in a giant discussion, and we had all learned something about how not only their families, but our patients with Long Term Illness grieve, too – for all that they have lost – and that their grief (a normal part of LTI) can mask and mimic depression, which is not normal and can and should be treated, no matter how late it is found. Depression in LTI is underdiagnosed and undertreated; incidence is 22 to 77%, so if you have four LTI patients, at least one of them is depressed and needs treatment.

Discussion ensued: depression can overlap with grief; normal dying can have features of both. How to tease out the depressed ones? Depression scales – rating systems which can be used by nonpsychiatrists to identify patients who are likely depressed – were presented, leading to the TIGDS (terminal illness grief depression scale) which isn’t perfected yet. Nor is our presentation of the possibility to our patients, who usually deny depression because of its stigma. Three video clips illustrated very different patients with simple anxiety, depression, and acceptance of terminal illness – which was inspiring.

James Condon, MD