Hospice and Palliative Medicine

International Palliative Care Network Conference 2014

Palliative Care Network’s unique conference strives to achieve its mission of “Palliative Care for Everyone, Everywhere.” This is achieved by ensuring the free flow of information and narrowing the knowledge gap. Submission, participation, and access to conference materials is FREE. The online conference allows palliative care professionals from various disciplines around the world to share and improve the understanding of palliative care. This ultimately results in alleviating suffering of patients worldwide. The conference is an academic exercise held in collaboration with leading Palliative Care organizations. Join for FREE and take part in the conference.

Reflections of the AAHPM Research Scholars Program and the NPCRC Foley Retreat

Last October, I was fortunate enough to attend the National Palliative Care Research Center’s “Kathleen M. Foley Research Retreat” as one of AAHPM’s Research Scholars. The annual Foley Retreat brings together the country’s leading experts in palliative and hospice care research to discuss the state of the science, set priorities for future research, and allow for the creation of new friendships and collaborations among colleagues. It is a remarkable experience.

As a non-clinician health services researcher whose work is clinically-focused, it can sometimes be a little bit daunting to find where you belong. Does a non-clinician fit in at a clinical society meeting (like AAHPM’s Annual Assembly)? Sure. But often, the annual meetings of clinical societies predominately cater their offerings towards practitioners – and rightly so. Well, what about more methods-focused organizations? Sure, those are phenomenal meetings, too, but let’s be honest – sometimes those meetings tend to “geek out” over the minutiae of research methods at the expense of real-life applicability. The sweet spot for someone like me can be hard to find.

But enough with my Goldilocks-meets-Little Orphan Annie soliloquy. I can confidently say that after last fall’s NPCRC Foley Retreat, I have found a community where I believe that I belong. The Foley Retreat is one of the most inspiring meetings I’ve attended, and the passion of its attendees is readily apparent. These individuals are the true leaders and innovators in palliative care research. They are the ones actively working to build the evidence base for the care of those with serious illness, the ones who have paved the way for junior palliative care researchers, and the ones who we ultimately aspire to emulate in our careers. Aside from seeing exciting research presented by both junior and senior colleagues funded by NPCRC and ACS, there is another aspect of this retreat worth highlighting. The relaxed atmosphere of the retreat allows for friendly and supportive interactions amongst attendees. Indeed, I have never felt so welcomed during another professional meeting – mid-level and senior researchers were genuinely interested in my work, freely providing their suggestions, perspectives, and general career mentorship. The Foley Retreat makes the nurturing of junior attendees a priority – something that as an early stage investigator myself, I truly appreciate.

I can’t adequately thank AAHPM for its ongoing commitment to my career development. The Research Scholars Program is but one example of how AAHPM is dedicated to supporting and advancing the careers of junior palliative care researchers. Thank you for affording me the opportunity to participate in such a phenomenal experience. I’m already excitedly looking forward to next year’s retreat!

Dio Kavalieratos, PhD
Postdoctoral Fellow, University of Pittsburgh School of Medicine
Adjunct Assistant Professor of Health Policy and Management, University of North Carolina at Chapel Hill

Physician Engagement & Influence in Organizational Management

So how is the leadership thing working out? Palliative care, hospice care and healthcare in general has evolved into the most complex team sport of all time. And getting people to move cohesively around a simple common ground effort should not be that hard…but it is. Some try the bull-horn approach (I did that for a while…and it worked as well as me telling my patients to lose weight), other leaders try the expert approach (I am so smart…that I will just do it myself…)- that didn’t work either (and it was really tiring). Leadership is about building influence and the capacity to change anything with your teammates…not to them.

How do we do this? How do we create common ground that everyone knows, supports and contributes to? How do we tap the intelligence of the team (all of us is always smarter than one of us)? How do we effectively communicate with each other. All of this sounds so simple, but so infrequently done. I look forward to spending a day of discovery, skill building and practice to lead your team. See you soon-

Stephen Beeson MD
Founder, PracticingExcellence.com

ACPE faculty Stephen C. Beeson, MD, will lead the 2014 AAHPM Leadership Forum Ignite Program – Physician Engagement & Influence in Organizational Management. Ignite premieres during the 2014 Annual Assembly and will be offered as a full-day learning experience in subsequent years.

Advance Planning: More Than Care Decisions

There is much talk in health care, especially in the fields of palliative and end-of-life care about “Advance Care Planning”. And rightly so. For those with advanced illness, this process is critical to patients receiving the treatment they want and only the treatment they want. The process done well clearly improves patient’s perceived quality of life, reduces the burden of suffering, raises patient satisfaction, and also seems to reduce overall health care costs.

For a medical treatment team, whether palliative care or other, the process often needs to be focused on decisions about health care choices. Those are our immediate concern and often those concerns truly need to be addressed in the very short term such as making decisions about resuscitation with an elderly patient suffering from heart failure and pneumonia.

However, there is also a class of “patients” emerging who, while they have a diagnosis of HIV/AIDS or “terminal” cancer are not necessarily near death and, because of maintenance therapies that can often have very controllable side effects, look and feel fairly healthy. They can therefore do lots of “normal” things and lead a “normal” life. The other day I saw Magic Johnson on TV announcing he has purchased yet another sports team in LA. These people may not be so different from someone like me. I’m healthy for my age but will soon be at the age where I will be forced to begin accepting Social Security payments whether I like it or not. I clearly have a lot less of my life ahead of me than I have behind me.

In this situation, certainly the decisions we generally associate with advance care planning are critical. Under what circumstances do I want to be kept alive if I can no longer make decisions for myself and by what methods? But as I begin to seriously engage this phase of my life, I increasingly realize that there are questions that go far beyond this which, if I engage them seriously, will make all of the life I have left more complete and fulfilled. The first issue for me seems to be that if there are things I want to do or a way I want to be sometime in my life, I need to be about creating that reality for my life now. And I can create much of that reality if I plan for it. However, this planning also means re-examining some assumptions about how I have lived my life. Do I really need the “security” of a steady job and is that security coming at a price that I no longer need to or want to pay because it is keeping me from other things I want to do? How many of my possessions would I really miss if I didn’t have them anymore? Do I continue to need to own a house with the responsibility that brings or can we be free of it?

These are not simple or easy questions. I have no intention to ever retire in the normal sense. I don’t even play golf and I don’t like either Florida or Arizona. I want to cook more and maybe learn Spanish. And I want to continue my professional journey down a road I still have intense passion for.

My point in all this is that, while advance care planning in the medical context is important, it is really only a part of a larger conversation. And this is not just about a bucket list either although that can be part of it. Ideally, it should be the end product of a much longer and intricate process of deciding how you want your life to be whether you have some idea of how much longer that life will be or not.

Certainly, for us as chaplains, I think we need to be much more intentional than we have been about engaging our patients and their caregivers in these larger issues for themselves. To the extent we can help patients explore whatever these kinds of questions are for them, we will help, not only make the decisions about Advance Care Planning, but create the lives that they want for themselves and those they love.

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

Community Inspiration

I want to express my sincere gratitude to the organizers and sponsors of the seventh annual Kathleen M. Foley Palliative Care Retreat and Research Symposium. This was my second time attending the retreat designed to provide a forum for interdisciplinary palliative care researchers. Participants include grant recipients from the National Palliative Care Research Center (NPCRC) and American Cancer Society (ACS), research scholars of the American Academy of Hospice and Palliative Medicine (AAHPM) and Hospice and Palliative Nurses Association (HPNA), as well as other leaders in the field of palliative care. Once again, the meeting lived up to its reputation as one of the best for learning, collaborating, and developing new ideas.

Let me back up. I am a junior investigator with aspirations of becoming an independent palliative care physician-scientist. During the weeks prior to this year’s retreat, I had what was probably the first of many internal debates about my career choices. Let’s face it: academic medical careers can be daunting. I was struggling to reconcile my sheer conviction in my research with the realities of the current funding climate, personal fears of failure, and work-life balance. Put bluntly, I needed community and I needed inspiration.

Within minutes of the welcoming remarks, I thought, “Oh yes. HERE are my people. HERE is my inspiration.” And, that the sense of community and inspiration just kept coming. Whether it was the opening, middle, or closing plenary, I was glued to my seat, fascinated by the research (and frantically scribbling notes in the fancy notebook supplied by the venue). I watched my mentor (the incredible Joanne Wolfe) accept the American Cancer Society’s Pathfinder Award with grace, humility, and humor. She reminded me that all of us have similar struggles, but we also find great joy and gratitude in our work. During my own work-in-progress presentation, I solicited and received dozens of helpful comments and suggestions for continuing and expanding my own research projects. (In fact, I discovered yet another challenge in academic medicine: reigning in my own enthusiasm.) During a break-out session for pediatric palliative care researchers, we shared mutual pitfalls and successes in our research endeavors, providing yet more perspective of how to navigate my own career development. And, on top of everything else, I met several of my role models and other respected leaders in the field. I left with a renewed sense of commitment.

In retrospect, I realize the Kathleen Foley retreat has (again) succeeded in exactly what it aims to do. It provided a young investigator with a sense of community, inspiration, and purpose. I have no doubt the more senior investigators would say the same. I say again to the organizers and sponsors: “Thank you for this incredible opportunity.” I am already looking forward to the next one.

Abby R. Rosenberg, MD, MS (2012 AAHPM Scholar)

The Pros and Cons of a Fellow Match

Nicky Quinlan, MBBChBAO MRCPI, and Conrad Williams IV, MD

Hospice and palliative medicine (HPM) is growing as an accredited specialty, in keeping with the growing need for timely palliative care for the seriously ill population of all ages. Currently, the only route to HPM board certification is through an accredited fellowship. HPM has not yet joined the National Resident Matching Program (NRMP) match process, whereas geriatric medicine will have its inaugural match day in January 2014. We believe it is time for HPM to participate in what has become the gold standard process for fellowship fulfillment. We elicited opinions of and experiences with the current asynchronous “nonmatch” application process from colleagues to assess the pros and cons.

Challenges of Rolling Admission
“My top three programs had interview dates separated by 4 months each, leading to my having missed the deadline for one, being offered a position by one, and then not being able to interview at the third because of the length of time prior to their selection process,” one colleague reported. “In my opinion, we have ‘arrived’ as a subspecialty and we need to act like it, including joining, at a minimum, the timeline of the NRMP. This makes further sense due to the number of programs that are transitioning to using the Electronic Residency Application Service as an application tool.”

Another physician commented on how the rolling fellowship admission process affected her family. “Without a formal match, I watched my husband be forced to make huge career decisions on the information he had at that moment rather than all of the information that could be available. Getting fellowship offers at different times forces people, and families, to act on urges rather than thoughtful, prediscussed plans. When more than one offer comes into play, it turns medicine into a business, and in essence, is no longer a true match. I also find it ironic that my husband and I could couples match in residency and happily live together for 3 years, but when it came to applying for fellowship, this was not a possibility. If palliative medicine became a formal match, it would allow for the possibility of some couples matches if the timelines were the same.”

One of our respondents also suggested how the match program may help the field better compete with other specialties. “I emailed the program director directly and interviewed informally at a medical conference and then later formally with program faculty. Shortly thereafter, I received an offer that overlapped with an offer from a different program at the same institution. It was a tense time to decide which specialty to pursue, but it has worked out well for me. I can see how the match can level the playing field for all involved.”

A Case for Rolling Admission
One physician who benefited from the rolling admission process remarked, “My process worked out well for me because I came to palliative care after all of my fellow classmates went through the match. Palliative care as a service came late to my hospital (during my second resident year) so it was [my] third year by the time I was fully exposed to it and knew I wanted to pursue it as a career. That meant I would have had to wait another year and perhaps [the program] would have been with one less fellow. The nonmatch rolling admission process was a win-win for both me and the program.”

We have reported the experiences of only four fellow candidates, and this by no means represents the entire applicant population. However, we have tried to provide a sample of varying experiences and opinions. Given overlapping and disparate rolling admissions for various programs, it appears many candidates are afraid of shooting themselves in the foot or, worse yet, burning bridges with programs by accepting a position then later rescinding it. The uncertainty and apparent stress inherent in the current application process is palpable in the responses.

AAHPM has met with representatives from NRMP and has made available an informative webinar on the match process targeted to program directors (www.aahpm.org/resources/default/national-resident-matchingprogram-webinar.html). Interest surveys have also been distributed and collected from hospice and palliative medicine fellowship programs.

The AAHPM Board of Directors will consider a recommendation by the Leadership & Workforce Strategic Coordinating Committee and Academic Palliative Medicine Task Force to move forward with the next steps necessary toward Academy involvement in the NRMP match over the next several months. What are your thoughts and opinions?

Collaboration Between Palliative Medicine and Oncology

Larry Beresford

The opportunities—and the imperatives—for the palliative care field to collaborate with other physicians, and with oncologists in particular, are detailed in an article I wrote for the latest issue of AAHPM’s Quarterly newsletter. The Academy is partnering with oncology groups on a number of fronts, including a joint project with the American Society of Clinical Oncology to test technological approaches for getting the latest palliative care research into the hands of working oncologists. The Academy was also represented at a recent meeting hosted by the American Cancer Society’s Cancer Action Network to talk about how to advocate for palliative care in Washington. This kind of collaboration increasingly points toward the largely uncharted realm of out-patient and community-based palliative care where many of the patients we want to reach receive their care from oncologists and other physicians.

As this article was being finalized, a similar exploration of the palliative-oncology interface was offered in a June audio-conference from the Center to Advance Palliative Care on “embedding palliative care in the oncology clinic” by palliative care leaders from Massachusetts General Hospital. These examples reflect the growing consensus that there simply won’t be enough trained, board-certified palliative care specialists to go around in a rapidly reforming healthcare system that is finally starting to recognize their intrinsic value for patients with serious illness.

Given current and anticipated hospice and palliative medicine workforce shortages, there needs to be some way to leverage this precious resource for maximum impact. And that would seem to demand better integration with other providers through a kind of two-tiered system of palliative care. Primary care physicians, oncologists, and other specialists would be oriented to the basics of providing palliative care for their patients, while cued to when a more specialized approach is needed via referral of their more difficult cases to palliative care specialists.

Oncology is a logical place to start experimenting with this approach, as the quarterly article describes. We’d love to hear how your palliative care program is pursuing greater integration with oncologists and other specialists and involving them in providing primary-level palliative care. Perhaps the next great arena for collaboration, coordination and integration is with the more than 30,000 hospitalists now practicing in U.S. hospitals. They, too, are centrally located to identify patients who need palliative care and to provide the palliative care basics for the majority of such patients.

Navigating the Changing Landscape of Health Care

Health care has become a world of dizzying change as more and more people realize that the current system is not working for anyone. There are new regulatory models, new care delivery models, and new funding models, but no one has the silver bullet. Along with the increasing pace of change comes a flood of new concepts and terms to describe them, many of which are ill defined and themselves evolving.

Nowhere is health care changing more fundamentally than in how it regards the role of the patient in the process of care. Patient satisfaction has long been a standard metric for many health care institutions, but for many never rose above a “nice to have” next to the “must haves” of clinical effectiveness and financial viability. In fact, many thought patient satisfaction often got in the way of the other two goals because giving patients what will satisfy them was thought to cost money and slow down or even subvert the clinical process.

Then HCAHPS drove a change to “patient experience” – related to patient satisfaction but not the same. Experience is about how reliably a given process like pain control happens and satisfaction is about how happy the patient is with that process. And finally we have arrived at “patient engagement”- a subset of “patient experience” perhaps but maybe the biggest change of all. Fundamentally, patient engagement requires that we who provide care involve the patient as a full partner in the planning and carrying out of that care. This change would seem to mark the official death of medical paternalism. But, it certainly feels like “selling the farm” to many. How can good care result when we let those without training in the field have at least a vote in the treatment decisions and maybe even a veto? Certainly lots of people will make “bad” decisions.

To those of us who are familiar with the history of how authority has operated in western religion, this debate has to sound familiar. Arguably, the most far reaching change Martin Luther and other reformers brought about in western Christianity in the 16th century is the idea that every Christian can have their personal relationship with God and can independently decide what they believe. This change was implemented in part by translating the sacred text of Christianity into a language that each believer could read or at least understand. For the most part, the authority of the ordained religious leader remained as the expert on belief and practice but that role became much more advisory than prescriptive. The religious leader now had to convince the faithful that a certain belief or behavior was “right” rather than having the belief or practice followed just because the leader said so.

Modern professional health care chaplains have long been trained to operate in this advisory model. It has been for years against the codes of ethics and best practice in professional chaplaincy to tell someone what to believe or practice unless specifically asked for that advice. Patient engagement has been the standard of care. Those of us who have worked in this way for a long time are very comfortable letting the patient lead the conversation and reach their own conclusions about what their own religious or spiritual belief and practice should be even when they differ from our own and how that belief and practice can help them cope with their illness. In fact, this model of care seems to work better than dictating to the patient beliefs and behaviors which they then mostly don’t follow.

That experience of chaplaincy practice leads me to feel confident that true patient engagement of the kind professional chaplains have long practiced will in fact improve, not only the process, but the outcomes of health care. Many will resist as many have and still do resist this model of chaplaincy. However, I am convinced that professional chaplaincy can be a major facilitator of this necessary change and can help our patients and our health care colleagues embrace this new and strange but ultimately very beneficial model.

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

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

Hospice and Palliative Medicine Commit to ‘Choosing Wisely’

by Larry Beresford

On February 21 AAHPM, on behalf of its members and the specialty of hospice and palliative medicine, joined with 15 other medical societies to introduce Round Two of Choosing Wisely, a major national health care quality initiative sponsored by the ABIM Foundation. In a health care system undergoing rapid reforms, serious turmoil and escalating demands to raise quality and reduce costs, palliative care is often offered as a solution for providing appropriate care more in line with patients’ and families’ goals, with fewer unwanted and unhelpful treatments and, frequently, lower overall costs. But increasingly, HPM will be asked to show the evidence for the quality and efficiency of its own services, just like other sectors of health care.

The Choosing Wisely campaign challenges participating medical societies to name five treatments that are frequently performed but often unsupported by the medical evidence—and to share this list with their members and the public. AAHPM accepted that challenge, and took its place at the podium on February 21 with other societies concerned about their place in the health care value equation. The latest issue of AAHPM’s Quarterly newsletter describes how the academy developed its list, who participated in that work, and how academy members can join in the campaign in their own communities and facilities.

Now we’d like to hear from you. What do you think of the Academy’s Choosing Wisely list? Are there other treatments of questionable value that you think are equally deserving of quality improvement interventions to target unnecessary utilization? What is being done in your work setting to promote the goals and values of the Choosing Wisely campaign?

Larry Beresford is a freelance medical writer from Oakland, CA, who specializes in hospice and palliative care issues.