Archive for March, 2010

Evidence-Based Approach to Cutaneous Treatments

This morning, I attended the concurrent session on the evidence-based cutaneous treatment of nausea, pain, and neuropathy. This was overall a good session, although it reinforced the need for more research in this area since some of what we are practicing in this area is not highly evidence-based. Some of the salient points:

Cutaneous treatment of nausea:

  • N/V represents a common reason for PC consultation and admission, and is one of the most common admissions for ‘hospice failure’
  • We should have clinical practice guidelines since they reduce practice variation and may lead to better less costly care at the end of life
  • Topical gels are widely used in ~60% hospice pts; Advantages- known and inexpensive (eg NSAIDS for arthritis). Disadvantages – limited data about absorption and effectiveness of other commonly used gels (lorazepam, benadryl, haloperidol)
  • ABH (ativan, benadryl, haldol) gel guideline formation would be helpful.
  • However, there is no data showing that any of the drugs are absorbed from the skin in patients in therapeutic amounts
  • There was a paper by Bleicher, et al in 2008 – improved nausea, vomiting- but retrospective, no control group, other agents allowed.
  • ABH is <$1 a dose . If it works- great- could possibly avoid admission for symptom control, if not, admission for N/V might mean $2500/5 days
  • Study ongoing to collect pilot data on absorption of ABH gel.
  • Take home point: data for absorption and utility of ABH gel is limited, prelim evidence shows absorption is poor, and more research in this area is needed (and some recent efforts to obtain funding on this topic have been less successful)

Cutaneous Absorption of Morphine

  • Recent paper in J pain symptom mgmt (JPSM) – Judith Paice, March 2008: “Morphine bioavailability from a topical gel formulation in volunteers” – she noted in her experience that providers were using topical morphine, but since the drug is not lipid soluble , she asked whether there is really any evidence that this is absorbed?
  • Some studies of topical morphine delivered to open skin ulcers- there is some bio-availability (Ribero JPSM 2004)… but does it impair wound healing?
  • For this study, Judith Paice compounded a morphine gel formulation with PLO matrix applied to wrist
  • Randomized, placebo controlled, small sample of healthy volunteers, studied the topical morphine alongside SC morphine
  • SC – showed 100% bioavailability
  • Topical – showed very very low Cmax, bioavailability -> N/A (All plasma samples obtained after topical morphine admin had either no detectable morphine present or something below the limit of quantification)
  • Take home points: Bioavailability of morphine when administered SC is consistent with what we arleady know, and morphine is a poor candidate for transdermal drug delivery (at least, on INTACT skin)

Speaker #3 discussed other SC and IV medications for treatment of nausea, and consider checking the handout for this discussion since many medications were mentioned- too many to list here!

Overall this was a great seminar and the speakers illustrated the need for continued evidence-based studies for our practice patterns, and hopefully these will lead to development of clinical guidelines.

Aaron Olden, MD

University of Rochester Faculty

Rochester, NY

The unsung work of AAHPM committees

Blog #2 from AAHPM consultant Dale Lupu

So there were 26 AAHPM committees, task forces, and Strategic Coordinating Committees (SCC) working in 2009. Because so much of the work is “behind the scenes,” it may be mysterious to many Academy members. I’m going to try to pull back the curtain just a bit to give you a glimpse.

You probably can envision the work of the committee charged with developing the program for the Annual Assembly. Like other committees, this group works both at a big picture level and a level that is “in the weeds.” At the weeds level, they have to decide how many sessions and select those sessions (with apologies to the many wonderful submissions that just couldn’t fit into the program). At the big picture level they map the big learning goals for the conference: what are the learning gaps for the field? What do people need in their different work setting (hospices big and small, hospital based palliative care, long-term care, rural, pediatric, etc.). What do different experience levels need? This year that big picture thinking led to a decision to integrate more pediatric content into the program and to conduct our first-ever forum for medical and nursing students.

But what about committees like Business Practices and Workforce? What do they do? Let me give you just two examples. In the Workforce area, the Board charged the Workforce Task Force with monitoring workforce trends and coming up with a strategy to enhance workforce capacity. This is a big charge, and the task force initially took some time to study and educate themselves about the issues. Last year the task force met for a half day with a national expert on physician workforce issues (Ed Salsberg of the AAMC). This helped us understand how the physician workforce issues in HPM relate to the overall shortage of primary care physicians and the looming shortages in certain specialties such as oncology. When we went around the table, almost all participants reported positions staying open for a year or more, despite intensive recruitment. Many programs were giving up on recruiting from the outside and were turning to a “grow your own” strategy. The task force decided that an important first step was to describe just how bad the workforce shortage really was. The task force developed a Workforce Trends paper – which was approved by the Board yesterday. (Look for the paper to come out in JPSM some time this summer. It shows we need between 4,400 and 10,800 FTE’s in the field, but currently have only 1,700 to 3,300 FTE’s in practice.) Of course, knowing how big the problem is only the beginning. Now we need to develop a range of solutions to this big problem.

Now turning to the Business Practices Task Force. They started with a member needs assessment. The survey results spoke loudly and clearly. Members are hungry for salary and compensation information. The committee considered how to get good information to fill that need and recommended to the board that AAHPM invest in a professional compensation survey to be conducted by an outside firm with deep experience in salary survey and reporting. The board approved that imitative, RFP’s were sent out, proposals were vetted, and a vendor (Mercer) was selected. The committee is now working with Mercer to design a survey tool that will be simple to fill out, yet capture the complexity and diversity of compensation in our field. Look for the compensation survey in your inbox this spring.

That’s just a glimpse of the work that went into two projects this year. There were many more (the Business Meeting gave an overview of all of the biggies.) Meanwhile – I need to run to two more committee meetings. Wish I can spend more time in sessions. Maybe next year.

Just Being

Makowski and Epstein presented a wonderful explanation of the differences between mindfulness and mindlessness.
Mindfulness is purposeful with attention to one’s own mutual process during every day work with the goal of practicing clarity and compassion. I have to admit that being present totally takes a lot of work some days and the component of clarity sometimes comes after careful reflection. They talked about “attentive observation, critical curiosity and a beginner’s mind which is always open to the possibilities” as a great way to enter each conversation and meeting we have with our patient’s and their families. I found this reassuring because every meeting to me should not be a continuation of the ones before but a new story never told before because each person we encounter is unique.

Mindlessness as presented was a “tendency of the mind to seek premature resolution.” I do not feel it is our purpose to seek resolution but to facilitate. It was wonderful to see the reminder of music and art as a way to facilitate the mindfulness. It was introduced as a possible way to create harmony out of chaos. I think would be a great way to set the tone and bring a commonality to the purpose of our meetings, a baseline of sorts to be with and move from.

I was introduced to the term of “exquisite empathy – highly present, sensitively attuned, well boundaried, heartfelt empathic engagement.” The challenge of this for me is the continued work of knowing myself. In this work that we do, I find this an ever evolving and constant work that brings a more honest and heartfelt engagement and presence with everyone I meet in my day, and the welcoming of all the emotions that come in the family meetings, interactions with other staff, and the support required to do this work.

The take home message for me was that “empathy is emotional labor.” I had never thought of it in this way but it certainly explains why exhaustion can come from the patience and willingness to step into the world of our patients and the experience of just being.

The only way to remain mindful is to practice. How much mindfulness practice do you need? For me I want to practice this everyday by remembering to slow it down, be present, listen well, be open to accepting, and forgiving with all that I am. Will you join me?

Barbara Rogers, MSN

Three Conferences in One

A view from AAHPM consultant – Dale Lupu

There are really three conferences going on here at the AAHPM/HNPA annual assembly. I think most of you can readily identify two of them: the formal program as laid out in the program book, and the informal networking that occurs in the halls, restaurants, and standing in line to buy books. My own experience, and I’m sure many of you share this, is that the formal program is only the start of the learning. It’s those smaller hall and restaurant conversations with a few colleagues (both old friends and those just met) where many memorable pearls are shared. And where the feeling of support – “you mean I’m not the only one experiencing this?” – is stoked.

But this year, I haven’t had time to delve as deeply as I would like into either of those two conferences, because I am attending a third. This third conference involves about 200+ Academy members who have been working all year on the 26 committees that have been charged with advancing the five major goals of the Academy’s strategic plan. The work that has already been accomplished by these committees is inspiring. That’s good, because we will need the inspiration to tackle the work still to be done.

Committee members conduct their work throughout the year via conference call and email. The annual assembly gives committee and task force members an opportunity to get into the same room, meet each other, reflect together, brainstorm, plan for the next year. Yesterday all of the SIG committee chairs gathered – the first time they have all been a room together (as SIG chairs). Today, I’ll be staffing the Academic Task Force chaired by Christine Ritchie, the Business Practices Task Force co-chaired by Chuck Wellman and Parag Bharadwaj, and the quality & Practice Standards Task Force chaired by Sydney Dy. Other committee chairs and members with their assigned staff person will also be meeting. Feel free to stop any of us and ask us to tell you about what we’re working on.

If you are interested in serving on a committee, visit the AAHPM page “membership/getting involved.”

Why you should be involved in policy – More from Diane Meier

Diane Meier made a compelling case for the PC provider to be involved in the policy process.
“The original sin”- of health care is that providers and patients determine what care is necessary with no regard to cost vs. benefit.

We spend 16.2% of GDP on healthcare, but rank 40th in quality indices worldwide. And that said, we spend 7.2% of resources on Paperwork/Admin, while the rest of the world is 3.2% We spend more on tests, hospitalization, etc.

Our patients (Chronically ill) account for majority of $ spent (but they have poor care and don’t get what they want (see teno Jama 2004:291:89-93) Medicare’s sickest 10% spend 37% of resoursces. Sickest 10%=$44,200 /yr vs 7,000/yr on rest. But the pts who get highest intensity of care report the lowest quality of care. (teno Jags 2005:53 1905-11.)

Does PC improve quality? Yes.
Per Casarett in Jags . If the patients with cancer recall Occurrence of Prognosis /goals of care they have better quality care, better grief process, lower cost.

If Rural patients with advanced cancer in NH and Vt received Telephone PC support from nurses, there was improved quality of life, symptom and less utilization. Survival interesting was longer but too small to be significant Bakitas M Jama 209 302 (7)341-9.

SO PC leads to better resource use, reduced bottlenecks in high cost units, and improved throughput (key to Hospital Directors) . We are the solution to this.

Here is one Conceptual model: Dedicated team=Focus + time= Decision making/clarity/follow through.
But this is Hard for administration. They think it’s happening. We need to make the case that it is not, and we can do this.
Email from CEO- “you mean no one is in control” YOU GOT IT.

And what is the Impact of PC Health affairs 2009

2% is the annual death rate in hospital
PC at minimum should do that. But ideal upstream and dc.

At 6% we can save a 300 bed hospital 3.15 million dollars

Here is the key:
Why HCR critical for PC
1. No GME dollars for fellowship
Cards /geri/ fellowship paid for by medicare
Pc fellowship paid by philanthropy ##1 threat to field
2. No loan forgiveness
Students with $140 K debt
3. No career dev support for junior faculty in medcal/prof schools
Geriatric career award is a model of how we can move forward

4. Inadequate NIH inv in ev base0.8% is invested from NIH in PC research
5. No compensation for distinct effort/skill of pc practitioners
Ex. Critical care codes get well compensated multi-organ, distraught families (hey those are our patients too)

6. No financial incentives (and have a neg incentive) for hospitals/NH, providers to deliver PC.
Some have even said won’t refer to hospice because they lose a lot of money (back to the original sin-
7. No reg requirement for PC services

Policies we need: Access and quality
To improve access we need a workforce (MD and nurses)
Financial incentive (positive reward)

No work force= no quality
we need Facuty to teach the next generation. So we need a PC training act
We need evidence base, therefore NIH must invest.

All of this is logical and simple, but to accomplish this is 10 yr process on Hill.
And the legislators really care about the local constituent. You need to be involved.

See the next post for how.
Paul Tatum

Policy Goals

Sean Morrison, showing his Canada pride in the Hynes Convention Center halls

Sean Morrison set a fantastic vision for the ultimate goal for Palliative Care (PC) in the future:
All patients will know what PC is and when to ask for it
All providers will have the knowledge and skills to administer basic PC
There will be the necessary infrastructure to deliver HIGH QUALITY PC.

But as they say, you can’t get there from here.

Both Sean and Diane Meier in her policy talk outline a vision for policy change.
Look for the AAHPM website to have a posting of the updated policy goals soon.

We must address:
1. work force (both getting the docs for now, the docs for the future, and the faculty to train them)
2. access and quality
3. increasing the evidence base
4. correcting public misperceptions
The academy’s policy committee meeting adds access to opioid analgesics, which they word broadly to include timely access to prescription medicines.
(Look for more on the REMS later, but now I need to go get some REM sleep)

To Sean’s AM talk: Policy changes 1, 2, and 3 must be to fix the GME cap. Fellowships currently depend on philanthropy as Medicare dollars don’t flow to the fellows as they do in other areas. This is not sustainable long term.

Paul Tatum

Please help beat the Death Panel label

See prior post on Diane Meier and importance of language.

So if you use the term supportive care you get more consults for your pall care program. There is a lot of misperception and bias associated with various names like pall care/hospice care/supportive care/comfort care.

Yet the name that stuck with the public is death panel.
Life panel is one alternative to rebrand the death panel label, but does it really do the trick, or does it just remind us of Death Panel?

What clever title do you prefer to trump death panel??????

Paul Tatum

Diane Meier and language and policy-making

Language Matters.
And misuse of language and misperception is a Major threat to us.
What was the misperception:
We are death panels and rationing

and it was in the eyes of Professionals(our colleagues, the public, AND Policy Makers
One implication of this: a grant was all but funded, had to be vetted in a Politicos office due to the source: the result, No $ because Palliative Care (PC) in the title
How big an issue is this: Diane Meier couldn’t get an interview for one committee because in the words of the staff office “Palliative Care is radioactive!”
we have a huge branding problem

What language led to this debacle: from the original “death Panel” bill
Section e. “an explanation by the practitioner of the continuum of end-of-life services and supports available.”

The result, former NY Lt Gov. Betsy McCaughey found the gotcha sound bite. “congress makes it mandatory to have counseling session that will tell them how to end life sooner, how to decline nutrition”
and ultimately Sarah Palin’s response on FACEBOOK “ my Down’s syndrome baby will have to stand in front of Obama’s “death panel”8/7/09
Language is really important.

Everything is about “OPTICS” . How does it look. We as PC were bad optics because we have not been trained about how we communicate. Papers that talk about EOL care, or terminal became “radioactive.”
The ultimate impact: adv care planning, nih funding, quality measures, hospital accreditation , gme funding for fellowship loan forgiveness all removed from HC reform bills due to slippery language.

We must communicate who we are and what we do to pt and family.

Diane emphasizes:
our Language needs to focus on the needs of audience.
What is it we fundamentally do: we match treatment to patient goals.
EOL misrepresents the purpose of pc. we match treatment to patient goals.
If we want to help pts and families who need us, we cannot force them to 1st agree they are dying.
we match treatment to patient goals.

(Hmm, she made that point 3 times in Bold, I guess it’s important!)

Paul Tatum

Diane Meier is working for you on Policy.

I thought I knew that the one certainty in life was Death and Taxes, but with the debates over health care reform and “Death Panels” I’m not even sure death is a certainty anymore, or at least that is the perception provided by the media sometimes.

That said, isn’t it good to know Diane Meier is working hard for Palliative Care in the Senate this year in a Health and Aging policy fellowship. To be clear, her remarks do not represent the views of the Senate or Senator Harkin.
The good news she emphasizes is that the rapid growth in palliative care programs and hospices gives us a place at the table for negotiations. WE ARE A NECESSITY in the health care reform solution. We need to change our outlook from fighting for the scraps, to a mentality that we are the key to solving health care problems in the US and we have growing numbers and impact.

Look for a few posts today and tomorrow to summarize–
1. We need to learn the right language to make our case meaningful and to make it stick with the audience. Look at what the wrong language can do. Think Death Panel
2. Look for a summary post of Top policy needs and why

3. Why you should be involved in policy
4. How to get involved in policy
Paul Tatum

Research in Children with Advanced Illnesses: Advancing the Field Together

Have you ever been in a room of like-minded individuals who share the same passion? It is an invigorating and energizing experience!

Hi, my name is Cindy Bell and I am the Blogger for the pre-session Research in Children with Advanced Illnesses: Advancing the Field Together. There were several experts who presented and many more who were gathered around the room. Each brought invaluable insight to identify some of our BIGGEST CHALLENGES in doing research involving children with advanced illnesses. Collectively we discussed some possible solutions. As we mull over and digest this information, this blog gives us the opportunity to discuss some of our lingering questions.

  • Chris Feudtner, MD PhD MPH, Director of Research, Pediatric Advanced Care Team at CHOP (The Children’s Hospital of Philadelphia) gave us a very broad overview of pediatric palliative care research as well as research priorities in the field. One of my most significant take away points from Chris was that through education, exposure, and support we morph over time. So, what do we need to change to get the job done? This type of research has many barriers. Someone mentioned that in the 5 years their study was open; they put in 15 amendments to IRB. As Chris aptly pointed out, maybe we need to change the name of the study and say,”This is a study about decision-making”; not palliative care or death and dying. We are not the only ones “morphing.” He had us think a moment about the impact of our research. What is the collateral effect of our research on our colleagues? Clinical practice influences research but research in turn, impacts clinical practice. So what do you and I need to change at our institutions through education, exposure support, and collaboration to get the job done?

  • Christina Ullrich, MD MPH, and Veronica Dussel, MD MPH, from Dana Farber Cancer Institute & Children’s Hospital Boston kept the ball rolling as we discussed some of our main challenges and possible ways to overcome these challenges.
    • What are some of the barriers you are still struggling with that you would like to discuss further?

  • Pamela Hinds, RN PhD, FAAN Director of Nursing Research at Children’s National Medical Center in Washington D.C. offered insight on Qualitative Research which allows us to listen to the problem and develop ways to address the problem. Being “listened to” can be very therapeutic for our patients and their families who are facing life-threatening diseases.
    • One important caveat for qualitative researchers is to match the person, topic, and context. Pam presented specific education on coding data for Content Analysis and Grounded Theory methods. Some of us had questions on the software available for coding. There are 2 programs that several participants are using: NVIVO and Atlas-TI. Betty Davies, RN PhD FAAN, shared some names of “experts” who are available for collaboration on Grants, including Guenther Krueger (NVIVO) from Burnaby, BC, Canada and Nick Wolf (Atlas-ti) from Santa Barbara, California.
    • PROMIS outcome site is another resource Pam mentioned. There are some outcome measurements for pediatrics that have been developed, although they haven’t been tested in really sick children yet. Check it out!

  • Joanne Wolfe, MD MPH, Director of Pediatric Palliative Care at Children’s Hospital Boston offered wonderful insights throughout the day and expertly summarized our ½ day session. I have briefly included some of the highlights. Please feel free to add your thoughts!
Our Big Challenges Possible Solutions
  • To facilitate an environment that will support research for children with advanced illnesses
  • Start somewhere – do what you can do, then bring back your publications to your institution
  • To develop multi-site studies to move the science forward
  • Build collaborative relationships- start simple and work together
  • What ways you have developed these collaborations?
  • To extend beyond our primary discipline to conduct interdisciplinary research across groups
  • Ask, invite, and be visible within your organization
  • To reach beyond our borders to collaborate with other Nations
  • Recognize the unique contributions of other cultures
  • What are some ways you have been successful in collaborating internationally?

Thank you to our excellent facilitators pictured left to right (Joanne Wolfe, Pamela Hinds, Christina Ullrich, Chris Feudtner, and Veronica Dussel).

It has been difficult to capture all of the wonderful information that was discussed. Now it’s your turn to add your thoughts and comments. Happy Blogging!

It has been my pleasure,

Cindy Bell, PhD(c), RN

Pre-doctoral Fellow, Mary Margaret Walther Program of Cancer Care Research, Indiana University. (Novice blogger)

SAVE the DATE: Quality of Life for the Children: The Fourth Annual Pediatric Palliative Care Conference November 5 & 6, 2010. For more information email