Archive for April, 2013

The Role of Individual Advocacy in State Efforts to Promote Palliative Care

by Amjad Riar, MD

Nearly a decade ago, during my training as a third-year medical resident, one of my rotations in oncology was at Johns Hopkins. One of the responsibilities was to admit patients with advanced cancers, and I saw oncological emergencies for seriously ill cancer patients. This ignited the thought in my mind that — even in this state-of-the-art, world-class hospital providing excellent, disease-focused medical care — we are missing something relating to patient and family needs. Soon after my training was over, I began practicing as an internist but kept on exploring until I found the answer to my question, and that was a palliative care fellowship. I was excited that the answer meant patients in need would benefit from good pain control, effective symptom management, and an approach driven by their goals of care. But I realized that it is more complicated than I thought, when I found myself explaining to patients — and most commonly to other physicians — that palliative care is not about dying and is not only hospice, but is focused on all the things that can come before hospice. There wasn’t — and still is not — a single day in my practice that I don’t find myself explaining and trying to educate other docs about palliative care.

I have seen myself struggling with patients in so much pain and suffering from various symptoms in hospitals, and yet the attending physician is not interested in a palliative care consultation due to a lack of understanding about the focus and expertise of palliative care teams. This motivated me further. In hoping that one day I would see palliative care available to all patients and families and more education made available for all the stakeholders in health care, I realized the need for public policy advocacy and thought to approach the legislators in my home state of Maryland. I started calling their offices and writing letters with facts about palliative care … how it can lower health care spending while improving quality of life as well as quality of care. For two years, I tried to make the case to a few lawmakers. Most of them quickly concluded the conversation by saying that we already have hospice-related legislation, and they didn’t think a palliative care bill would get through that easily. Eventually, my persistence paid off, and I was able get through to one lawmaker who agreed to consider introducing a bill to mandate palliative care services in hospitals statewide. By this time New York’s palliative care legislation was already in place, so I had more real scenario to present.

The problem that I really wanted to address through legislation was patient and family access in acute care settings, along with provider — and general public — education. This required me to learn many new tactics and skills on how to lobby effectively. I had no idea how the legislative process works. I was asked by our state delegate to review the bill he drafted. After many meetings and fine tuning the language, we had crafted a measure we thought would be effective yet not controversial. It was ready for presentation to the House committee.

Now the real work started. This taught me even more, including an appreciation for how hard it can be to achieve something so right in your heart and mind but which may not make much sense to others. I called the office of each member of the committee and asked for an appointment, eventually meeting with all 23 delegates one on one. My goal was to educate each and every member of the committee in person before the bill came up for a hearing, to explain why this bill is needed and how the subject matter is different from what they may think. I created a “one pager” speaking to the issue and need. The bill could only move forward if there was a favorable report from the committee.

This certainly was a strenuous learning process. While the committee members came to have a good understanding of what the palliative care legislation was intended to achieve, we hit a stumbling block when a few members decided to postpone consideration of the bill. But, with continued advocacy and support from other organizations, the committee chair decided to create a workgroup to further discuss the measure. We met on regular basis and, eventually, my advocacy efforts all paid off: in this year’s session, a palliative care bill was passed in both the Maryland House and Senate. It is awaiting the governor’s signature.

The bill requires the establishment of at least five palliative care pilot programs in hospitals with at least 50 beds across the state. The programs are required to collaborate with palliative care or community providers to deliver care; to gather data on costs and savings to hospitals and providers, access to care, and patient choice; and to report to the Maryland Health Care Commission on best practices.

Of course, this is just a first step on the road in right direction… but at least we are on the road! Next steps are really focused on continued education and involvement of stakeholders. I am focused on building coalitions, continuing collaborations, and expanding palliative care services in long-term care and non-acute settings. I will keep you posted!

In the meantime, my message is this: One palliative care provider can make a difference!!

We know the number of patients with serious illnesses is only increasing. In today’s highly specialized and fragmented health care system, these patients walk a fine line from being the beneficiary of modern medicine to becoming its victim. Informed decision making, along with early involvement of palliative care, can potentially help these patients and their families to avoid the latter. Consider advocating for palliative care in your state. Get active in promoting better health care for our future generations. I will be very happy to share more about my experience so you don’t have to go through unnecessary steps that I may have. And if you decide to take action, you might just uncover personal stories where palliative care has impacted the lives of key policymakers and, in doing so, find a champion for your cause. The hard part is first taking the initiative. Once you do, however, remain persistent! You will be surprised to learn that persistence will pave the way to success. If you believe in something right, just go for it — and keep marching until you reach your destination!

Should Failure to Follow Preferences be a Medical Error?

This past Tuesday was the annual National Healthcare Decisions Day when patients are encouraged “to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be.” To be clear, this is not about getting people to agree to a Do Not Resuscitate order or agreeing to limit their treatment options if that is not what they want. It is presumably an opportunity for patients to take control of their care at a time when they otherwise would not be able to do so. For those of us for whom religious beliefs and values inform and undergird these decisions, it is about taking advantage of an open invitation from a health care system which so often seems oblivious to those beliefs to make them known and document them in relationship to care decisions.

In observing this day, Dr. Eric Widera offers a very provocative post on GeriPal. He cites a recent editorial by Theresa Allison and Rebecca Sudore in JAMA Internal Medicine and a related study by Heyland and colleagues investigating documentation of treatment preferences by a sample of elderly patients in Canada. One of the most dramatic and disturbing findings of the study was that, for those who had stated preferences, over two-thirds of those preferences were either not documented at all or documented incorrectly in the medical record. This finding calls into serious question the basic premise of advance directives. If one’s stated preferences are likely not to be observed, why even bother?

But Allison and Sudore up the ante even further when they state:

“Discussions about goals of care and code status constitute a medical procedure every bit as important to patient safety as a central line placement or a surgical procedure. Much as we have developed systems to improve patient safety in surgical procedures, we need to develop systematic approaches to discussing patient values and goals of care.”

Dr. Widera then raises the obvious question, “Should failure to follow preferences be a medical error?”

For those of us who are not physicians, this could be an invitation for doctor bashing. However, we need to all take seriously that patient safety is everyone’s responsibility. So if this is about patient safety, we are all culpable. But, even if this is not a patient safety issue, I would expect that all of us believe that patient’s wishes should be respected and every effort should be made to make that happen.

The newly released 3rd edition of the NCP Clinical Practice Guidelines contains the following criterion under Guideline 8.1. This criterion applies equally to all members of the treatment team.

“All expressed wishes, preferences, values, goals, plan of care, surrogate decision makers and advance care plans are routinely documented, including the completion of clinical orders such as inpatient resuscitation status, out of hospital do not resuscitate orders, and health care surrogate declaration documents for adult patients.”

So it seems to me the bottom line here is that all members of the treatment team are obliged, individually and as a group, to make sure that all stated treatment preferences and advance directives are well documented, well understood by the team, and observed. If the finding of this study turns out to be true more widely, all of us bear responsibility. Dr. Widera along with the authors of the editorial raise an interesting and provocative question. However, no matter whether consensus ever develops around the answer to that question or not, the findings of this study should galvanize us all to action. The findings point out that while getting patients to fill out their advance directives is a necessary first step, there is another necessary part to the process which may be seriously broken. Each of us needs to be committed to point out that brokenness each and every time we see it.

George Handzo, BCC, CSSBB
President, Handzo Consulting
Senior Consultant, HealthCare Chaplaincy

After the Annual Assembly

The Annual Assembly is over. The boxes have returned from New Orleans and we have put all the items back on the shelves. Today, we had our “Post Con” meeting and talked about the specifics: what went right and where we can make improvements for next year’s Assembly. The staff shared some interesting facts:

• 2419 attendees from 15 different countries and every state in the union were in New Orleans.
• 509 gallons of coffee were consumed at the Convention Center.
• 51 companies exhibited in the exhibit hall and 27 companies were present at the Job Fair.
• 3486 sleeping nights were reserved for attendees.
• 439 Twitterers tweeted 6716 tweets – totaling 6.1 million impressions. There was lots to talk about!
• Attendees participated in 135 educational sessions and purchased 286 of recordings of those they couldn’t attend.
• 13 past presidents were present to celebrate the Academy’s 25th anniversary, including Drs. Carla Alexander, Bob Arnold, Andrew Billings, Ira Byock, Gail Cooney, Ron Crossno, Laurel Herbst, Michael Levy, Dave McGrew, Sean Morrison, Cameron Muir, Ron Schonwetter and Martha Twaddle.

For the staff, the Annual Assembly is a culmination of a year’s worth of planning, meetings and conference calls. We are excited each year to come to the meeting and come away re-energized by the passion our members bring with them. Although we are still in “recovery mode” from the 2013 meeting (going through notes from on-site meetings and following-up with attendees), the planning for 2014 has already begun.

The 2014 AAHPM & HPNA Annual Assembly in San Diego will be here in just 345 days – mark your calendars for March 12-15!

Laura Davis
Director, Marketing & Membership
AAHPM

Hospice, Hashtags, and Hot Sauce

“I’m sitting on a prop plane that smells like ranch dressing.” I texted my brother on the way home from #hpm13. His reply? “Hold your nose and hope for the best.”

Little did I know that I was the kind soul who provided the fifty seater with the odiferous presence of ranch dressing. The bottle of “Bayou Butt Burner Hot Sauce” that I snagged in New Orleans as a souvenir for my husband apparently could not withstand the pressure of my several journals worth of CME. That bag, saturated with seven dollars worth of ranchy, bayou goodness, still sits in the garage waiting for me to clean it up, a memory of a wonderful trip to New Orleans with an equally wonderful group of people.

On reporting on my trip, my boss said, “Yeah, it’s nice to go to those things. They’re energizing, but nothing ever comes of them in practice.” I agree in part; it IS nice to attend AAHPM’s annual conference. My goal for this year’s post-conference blues is to pick three areas of my home hospice practice in need of attention, and improve on them based on what I learned this year at AAHPM’s national conference.

So where to begin? First off, in trying to rehash tidbits for colleagues, I found myself searching my brain for tips, quips, or pearls handed to me this week. But where were they? As I sat, pondering, twirling my achy thumbs, it came to me.

Twitter.

As a TweetPro for this year’s conference, my tidbits are all on my twitter profile. I tweeted everything I heard that stood out to me, favorited others’ tweets, and retweeted the gems from the seminars I couldn’t attend. Now, they’re all there for me to savor. Pearls of wisdom, line by line, in 140 characters or less.

In all honestly, I took a lot of grief for being a TweetPro. A lot of people just don’t get it. Friends of mine from other sectors of life took offense to my overhaul of their twitter feed. My own family members texted me messages of hospice and palliative medicine exhaustion! But there were far more who did get it, who learned a thing or two, and who thanked me for the record-keeping. The TweetPro title encouraged us to spread the twitter-love to all those wishing to try, which allowed for fast information sharing and extensive networking. Within sessions, the role focused my mind on the topic being discussed, allowed me to engage quickly (and quietly) with others in other rooms and other states, answer questions, ask questions, and solidify the knowledge I was recording. Live tweeting the conference amplified my experience within the assembly, not only academically but socially as well.

Here comes the hard part. Now that I have the knowledge recorded permanently for the world to see, I have to figure out how to make it useful closer to home. I could just rest, knowing I’m a bit smarter now and that my CME hours are climbing, but that does nobody but me any good. I figure I can best benefit my patients by sharing the HPM love with my team of nurses, social workers, and chaplains.

Perhaps the best thing to come of my time in New Orleans was the time away from work to reflect on my patients and my experiences, both personal and professional, and how they affect me as a person and as a physician. In an attempt to share some of what I learned, I aim to be more supportive of my team and more accountable to my families. This is the type of goal that is fueled by the energy provided by both the AAHPM members and assembly.

Thank you to everyone who attended the AAHPM Annual Assembly in New Orleans this year. Each person in attendance helped me recognize that there are thousands of us who share in the same passion, and that it’s a passion worth fighting for.

Now, if you’ll excuse me, my practice, like my bag, waits patiently to be cleaned.

Bethany C. Calkins, MD
@MickeyMD913

Turning Death into New Life- An Easter Tale

In opening the Easter service in my church yesterday, the pastor reminded the congregation that Easter is centrally about turning from death to new life. He pointed out that this is not only about what we, as Christians, believe God did for us through the death and resurrection of Jesus in overcoming death, but a lesson we can use elsewhere in our lives. He reminded us that many in Newtown, our cross-county neighbor, have been able to turn the horror of the death that was visited on them into a focus on new life. They are certainly not in any kind of denial about the pain and suffering they continue to feel, but many have been able to focus on the blessings and gifts that they still have in their lives.

And this example is seen lots of other places in our lives. For those of us who work in health care, we almost daily see patients and their loved ones who are confronted with tremendous suffering. Some become bitter and angry, but others genuinely acquire a greater appreciation for parts of life they had previously taken for granted. What is still unknown is what causes individuals to turn one way or the other. For those of us who are chaplains, we look for what parts of spirituality or religious belief support this kind of resilience and what parts impede it.

In this search, case studies are important. They are each unique of course but they each give us powerful insights into the ways some people live life to the fullest in the face of suffering and death and others give up on life almost completely.

Those of us who attended the recent AAHPM annual assembly were treated to a plenary by David and Deborah Oliver which I, and I know many others, felt was not only highly educational, but awe-inspiring. David has been living with stage 4 cancer. He and Deborah have “gone public” with virtually all aspects of their journey- both the struggles and the triumphs. But what impressed me more than anything else is their determination to live their lives in all the fullness they can muster including family, friends, travel, and each other. They are determined to find joy and fulfillment in their lives and, because they keep looking, they find it in abundance. There have certainly been trials along the way mostly with the medical system which are also instructive and well documented. David is determined to keep control of both his life and his death. His “HOPE” for dying is:

(H) to die in my own home
(O) surrounded by others
(P) pain free
(E) and excited about living

Many of you may already be familiar with David Oliver from his series of YouTube videos. He also has an ebook out called, Exit Strategy: Depriving Death of its Strangeness that is available on Smashwords. Whether you are a veteran in the field who can always learn more, someone just entering health care, or a patient or caregiver yourself, both David’s videos and book are must sees.

George Handzo, BCC, CSSBB
Senior Consultant
HealthCare Chaplaincy

Behind the Scenes of the Annual Assembly

The Annual Assembly, like baseball season, comes and goes quickly. However, the planning is ongoing and takes a year. Prior to the Annual Assembly, there is much discussion past assemblies – the good, the bad, and the mediocre. The opening day of the Annual Assembly for AAHPM and HPNA – is always exciting. Okay, perhaps not as exciting as Opening Day at Fenway Park for the Red Sox, or opening day for the baseball season in general. But still exciting and rewarding. We have the previous stats from other annual assemblies – winning sessions, home run session and speakers, fouls of language and lack of inclusion, and outs of people who promoted something other than palliative care principles. We have a variety of list of players, and a back-up plan for most last minute changes and pinch hitters. It is the time to see everything unfold.

The strategy behinds the conference is a fluid process, a sort of quality assessment improvement process. Discussions include an overview of the assembly, scheduling, team building, and yes, the process. These are ongoing issues but each assembly has a special focus with a theme and the attention to new leaders and new research in the field. Indeed, the plan behind the “The Game” or the Annual Assembly is much like the delivery of palliative care. There is a “general template for evaluation” – the blueprint of the conference. It outlines everything that needs to be done keeping the group in track with tasks and dates. The evaluation also includes review of the abstract submissions; a competitive process. It is important to understand that the level of conference sophistication continues to rise. All accepted abstracts have an average score of 4.5 or above in a rating of 1—5. This has risen significantly even from two years ago when it was around 4.0.

The amount of “advanced care planning” for the Annual Assembly is extensive – with the “goals of care” established in the overall objectives of the meeting: networking, education, and renewal. The “surrogate decision makers” are comprised of the members of Planning Committee. It consists of the Co-Chairs representing HPNA and AAHPM as well as the planning committee members reflecting the diversity of both organizations, the Research Sub-Committee Co-Chairs and their research committee, and the staffs at AAHPM and HPNA. There are constant “family meetings” to provide information of the state of abstracts, plenary planning, conflict of interest, continuing education credits, and the like. There are “decision points” in terms of abstract review and acceptance, content review, and the implementation of new technology into sessions. Above all, there is a “collaborative process” which helps when there are bumps. These include the inevitable technology glitches, communication with abstracts not being accepted, and keeping everyone in the communication loop around decision-making. Thus, there is the philosophy “hope for the best, and plan for the worst” and “promoting excellence.”

Being Co-Chair at the meeting is like being a Baseball Manager. You are in the background working on the process. Then you are in the public domain when it all begins. You are responsible for what occurs at the conference. Since people know who you are, you hear the good and the bad as well as everything in between. People assume you know all the intimate details of the conference, from the telephone numbers of the AV people, to Room Numbers, to session scheduling. To assure confidence in offering up-to-date information and assistance, I carry a notebook with all the conference details. My notebook has an hour by hour, day by day review of the schedule, from the schedule with Title of Presentations, to Presenters, to Room numbers for my reference. I also have my own personal schedule with the events which includes dropping in on preconferences, new speakers, or new technologies. Yes, this may be old school, but I can tell you it is often easier and quicker than getting online access to the conference sessions.

On Wednesday, the pre-conferences are the warm-up or “pre-season” for the Annual Assembly. You get to see your co-collaborators- the national staff from AAHPM and HPNA – whom you have spent many telephone and e-mail hours working with, to check in to make sure everything is ready.The Opening Reception sets the tone; the personal connection. Relationships are renewed with the delight of seeing friends and colleagues. New relationships are established as one puts names to faces of people you have worked with. On Thursday as the Opening Plenary begins, there is a feeling of “Game on-Here we go!” There are a variety of expectations for the day – to be inspired, to explore new areas, and to reconnect. The “season” has begun. On Friday, the “game” is in full swing the conference seems to be full swing, people are in a groove. Difficult choices must be made in terms of which sessions to attend arise, but that is a good thing. We want people to have conflicting choices they want to go to; rather than having a choice by elimination. On Saturday, the tenor is quieter. People have been in full swing for 2 days. They are aware it will end soon and they must say goodbye. An eerie silence begins to descend as participants begin to leave. By the afternoon, “The Game” is over with the sense of “Well played.” There is a bittersweet feeling; one is the sadness of it all ending and the other is a feeling of accomplishment of having achieved education, networking, and renewal. Just like a baseball season, the highs and lows will be discussed and reviewed in detail. Some predictions for the future will occur. But as in all baseball seasons, the hope is that next year, it will be a winner with same energy and enthusiasm.

Constance Dahlin, APRN-BC ACHPN FPCN FAAN
Northshore Medical Center
Palliative Care Services
Boston, MA