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A Word with the Authors: Primer Tracks Growth in Field

The fifth edition of the Primer of Palliative Care will debut at the 2010 AAHPM & HPNA Annual Assembly, March 4-6, in Boston, MA. Authored by Tim Quill, MD FACP FAAHPM; Robert G. Holloway, MD MPH; Mindy Stevens Shah, MD; Thomas V. Caprio, MD FACP; Aaron M. Olden, MD; and Porter Storey, Jr., MD FACP FAAHPM, the fifth edition has been extensively updated yet remains true to its original goal of providing foundational palliative care guidance to physicians who are interested in incorporating the basic skills of palliative medicine into their everyday practice. Since its first edition, the Primer of Palliative Care has been one of the Academy’s most popular and highly regarded books. We recently sat down with Dr. Porter Storey, the creator of the Primer and author of the first three editions, and Dr. Tim Quill, lead author of the fourth and fifth editions, to get their perspectives on the growth of hospice and palliative medicine and how they’ve responded to such growth through the evolution of this book.

The first edition of the Primer was published in 1994. At that time, how did you intend for the Primer to contribute to the palliative care literature? What were your original goals for the book?

PS: In the 80s, hospice physicians developed skillful ways of working in teams to manage symptoms and communicate with patients and families. Although there was little “evidence base,” these skills were clearly helpful to many patients facing their final months of life. This booklet was written to encourage physicians to take an active role in the care of these patients and to communicate a basic understanding of these methods to students and practicing physicians new to our field.

The field of hospice and palliative medicine has grown substantially since the first edition, and each edition has also grown. How has the Primer changed throughout its five editions, and how have you adapted the Primer to reflect the growing evidence base in palliative medicine?

PS: We have added both additional symptoms (e.g., mucositis), and many additional references, but the focus is still on helping those new to the field develop caring, confident proficiency in helping patients and families cope.

TQ: In the last two versions of the Primer, we have tried to integrate the expanding evidence base associated with palliative care, reflecting its maturation as a field. Although many areas still depend on expert opinion, more and more areas of practice are supported by scientific study. We tried in these versions to connect interested readers to recent reviews and original studies so that they could get directly to the literature that underpins many of our recommendations.

What are some of the most important changes to the Primer since it was last revised in 2007?

TQ: The 2010 version of the Primer has been edited, updated, and substantially restructured in comparison to prior versions. We screened each topic area for new evidence-based information published over the past 3 years by searching the Cochrane Database, by doing a literature review for evidence-based studies including randomized clinical trials, and by collecting the best available articles on each subject from our own files. Although not a true systematic review on each subject area, we tried to include evidence as it is emerging in palliative care and hospice since the book was last updated. In addition, the chapter on pain management has been significantly restructured, with more in-depth material on using and converting to and from fentanyl and methadone. The equianalgesic conversion card enclosed in the book has also been updated. New chapters were developed on Goal Setting, Prognosticating, and Self Care (Chapter 6) and on Care During the Last Hours of Life (Chapter 8). Other chapters on Gastrointestinal Symptoms (Chapter 4) and Delirium, Depression, Anxiety, Fatigue, and Spirituality (Chapter 5) have been substantially expanded. At the end of each chapter is a list of key articles for those seeking original sources or more in-depth information.

What audience do you hope to reach with the Primer and how did that audience affect the ways you’ve developed the content throughout each of the editions?

PS: Today there are excellent journals, textbooks, and online resources to help palliative care professionals improve their practice. This booklet is designed to focus attention on the core skills and to guide students, residents, and practicing physicians to these resources for more information.

TQ: We use the Primer with our medical students, residents, and fellows on their palliative care rotations. We have created a workbook to use along with the Primer which poses clinical questions and problems that can be solved by reading the relevant section of the book, and all of our trainees work through the questions connected to each chapter and bring their answers to two review sessions during the rotation. They keep their copy of the Primer after their rotation, and store it in the pocket of their white coats. It is also an invaluable resource for clinicians in virtually all medical fields trying to practice evidence-based palliative care alongside evidence-based medical care. Even as card carrying palliative care specialists, we carry the Primer with us on rounds in case we need to ensure basic dosing accuracy in addressing many palliative care problems, and use it regularly.

A book project of this nature takes a great deal of time in writing, editing, and review. Do you have any tips for physician-writers interested in publishing a book?

PS: Carefully think through the need for the publication and make sure there is a “niche” for this new effort. Consider other media, like blogs, online courses, or cell phone applications that might be more widely utilized. Try to recruit hard-working, experienced colleagues and publication staff to help you. Finally, anticipate it requiring lots more time and energy than you envisioned, but likely being worth all the effort.

TQ: I agree with Porter. It helps to have a passion for the topic, a clear plan for what you are trying to accomplish, and assurance that there is a demand for the product. For projects that are relatively broad and evidence-based, it helps to have a great team of reviewers, writers and editors who are devoted to the project, meet deadlines, and carry through their commitments. In our case, we have wonderful, committed co-authors as well as a publishing team from AAHPM who all really did a first rate job. This kind of project “takes a village” with everyone pulling a substantial part of the weight, and we have a wonderful team.

The Primer of Palliative Care, 5th edition, by Tim Quill, MD FACP FAAHPM; Robert G. Holloway, MD MPH; Mindy Stevens Shah, MD; Thomas V. Caprio, MD FACP; Aaron M. Olden, MD; and Porter Storey, Jr., MD FACP FAAHPM, will be available for purchase at the AAHPM Resource Center at the 2010 Annual Assembly in Boston, MA. Dr. Storey and Dr. Quill will be signing copies of the Primer and the UNIPAC QR on Wednesday, March 3, from 5:30-6:30 pm in the Exhibit Hall.

—Jerrod Liveoak, Managing Editor, AAHPM

Aerosmith, The Cars, and now…The 2010 Assembly Plenaries: Boston Rocks!

With the two weeks and counting to Annual Assembly we have a record number of pre-registrants all descending on the Hub. My HPNA co-chair and fellow Bay Stater, Pat Coyne, and I promise you a wicked good Assembly. We have a veritable smorgasbord planned and I’ve been given an opportunity in this blog to whet your appetite for the coming feast. Here I’ll focus on our plenary and Special Interest Group (SIG) Symposia.

First up, Thursday morning will be Lynne Hughes. Her plenary, “Comfort Zone Camp”, will focus on bereaved children. Inspired by her own experiences of loss as a child, Ms. Hughes is the founder of the Comfort Zone Camp (http://www.comfortzonecamp.org/), the largest bereavement camp for children in the nation. These camps offer a safe and healing bereavement experience for children that have lost a loved one. I’m particularly pleased that Ms. Hughes will be our opening plenary speaker, putting our focus from the start on the care of children. The clinical care of children will receive an unprecedented place of prominence at this year’s Assembly. This year’s new pediatric track will ensure that those that care for children will always have an educational opportunity focused on their needs throughout the Assembly.

Next up on Thursday, we are honored to have Roshi Joan Halifax of the Upaya Zen Center (http://www.upaya.org/about/index.php) speak on “Compassionate and Mindful End-of-Life Care: a Relational-Contemplative Approach for Clinicians.” Roshi Halifax is a Buddhist teacher, Zen priest, and anthropologist. She has worked with the dying and those who care for them for over 35 years. Take note that Roshi Halifax will also be teaming up with some very talented colleagues (Anthony Back, Susan Bauer-Wu, and Cynda Rushton) for an exceptional preconference workshop, “The Science and Practice of Contemplative Interventions for Palliative Care Clinicians” (P8).

Last year we introduced SIG Symposia as a new educational offering to bring special attention to our vibrant and varied SIGs. These symposia let our SIG members tackle weighty issues in a dynamic forum. They were so enthusiastically received last year that we are pleased to bring them back in force this year. We had a tremendous number of submissions from the SIGS and are pleased to offer the following choices on Thursday afternoon:

  • Fellowship Directors: “Peer Mentoring: An Innovative Model for Professional Advancement in Hospice and Palliative Medicine”
  • Physicians in Training: “Asking Tough Questions: Career Advice from the Experts”
  • Ethics: “Is It Time to Pull the Plug on the Principle of Double Effect?”
  • Ethics: “Palliative Medicine and Bioethics Interface: Collaboration and Cooperation or Codependency and Conflict”
  • Cancer: “What is ‘Palliative Chemotherapy?’ Perspectives from Oncology, Palliative Care, and Hospice”
  • Humanities: “Just Being: An Introduction to Mindfulness and Its Role in Tending to the Dying”
  • Pediatrics: “Decision-Making at the Extremes of Pediatric Palliative Care”
  • Long-Term Care: “Hospice and Non-Hospice Models of Palliative Care Delivery in Long-Term Care”
  • Osteopathic: “Osteopathic Manipulative Medicine in Palliative Care

If, like me, you haven’t figured out how to clone yourself to attend more than one of these great sessions, consider purchasing the audio recordings and/or flash drives of handouts. Both of these will again be available for purchase at the Assembly. I’ve found these items a great way to get the most out of the Assembly and not sweat it when there are two or more sessions I feel I just can’t miss. Which if we’ve done our job right, should be happening frequently!

On Friday morning we’ll be hearing from Deborah Grassman (http://deborahgrassman.com/) the Director of Hospice and Palliative Care at Bay Pines VA Medical Center during her plenary, “Wounded Warriors: Their Last Battle.” Ms. Grassman has been a hospice nurse for over 25 years in a VA hospital setting. Her new book, Peace at Last, has the goal of helping veterans, and those that care for them, to appreciate the impact of war and military culture on their living and their dying.

Do you worry about barriers to safe and effective pain management for your patients? How about the epidemic of prescription drug abuse in the US? The need to rationally balance concerns about both of these critical health care issues will be the topic of Dr. Aaron Gilson’s plenary, “A REMS for Long-Acting Opioid Analgesics: Anticipated Impact on the Dual Public Health Issues of Non-Medical Use and Patient Pain Care.” Dr. Gilson is the director of the US program of the Pain and Policy Studies Group at University of Wisconsin (http://www.painpolicy.wisc.edu/). He has dedicated his career to improving policies that affect pain management for people with cancer and other chronic conditions. Dr. Gilson’s perspective will be invaluable to all of us in hospice and palliative care. He is uniquely positioned at the forefront of this crucial area that has a direct impact on the care we provide.

On Saturday our plenary focus shifts to the science of what we do. Starting us off, once again, will be Drs. Nate Goldstein and Wendy Gabrielle Anderson. Our returning Dynamic Duo will present their “State of the Science” plenary. Don’t miss this opportunity to hear Nate and Wendy’s thoughtful interpretations of the latest research that may just change the way you provide care. Always an Assembly highlight, I’m absolutely delighted to have Nate and Wendy back this year.

Our closing plenaries on Saturday afternoon keep the focus on science. I’m ecstatic that Dr. Holly Prigerson of the Dana-Farber Cancer Institute (http://www.dfhcc.harvard.edu/membership/profile/member/38/0/), has agreed to join us to present her plenary on “End-of-Life Care as an Illusion—Wish Fulfillment: But Whose Wishes and Why?” I have to confess that when I look back over the last few years of research in our field, there is nobody I can name whose work has fascinated me more than Dr. Prigerson. The lessons her work teaches us about communication, coping and processes of care for the seriously ill and dying are profound.

Make sure your travel agent knows how essential it is for you to make it to our closing plenary. You won’t want to miss Dr. Jeannine Brant’s talk, “Strategies for Breathlessness at the End of Life.” Dr. Brant is an oncology clinical nurse specialist at the Billings Clinical Cancer Center as well as a master clinician and educator. She is just the person to update us on the science and best practices for managing dyspnea, arguably one of the most critical jobs we are called upon to do.

There you go. I look forward to hearing your thoughts on our plenaries and SIG symposia either here online or in Boston. Be there! Aloha.

Daniel Fischberg, MD, PhD

AAHPM Program Planning Committee Chair

The Queen’s Medical Center, Honolulu

The John A. Burns School of Medicine of the University of Hawaii