Posts tagged Resources
by Katie Macaluso, AAHPM Associate Editor
We asked AAHPM members last fall why they read the Academy’s member newsletter and what they might like to see included. The result of that survey and ensuing editorial board discussions is the newly redesigned AAHPM Quarterly (formerly the AAHPM Bulletin); if you are a member, it should have landed in your mailbox during the past few weeks. The spring issue showcases a design that matches the current branding of the Academy and includes a variety of articles related to hospice and palliative care practice.
Interested in what the field of palliative care looks like in other countries such as Vietnam, Uganda, and Nepal? Read Marcin Chwistek’s article on page 12. The Art of Caring column on page 18 shares strategies for coping with the burdens of the profession through creative writing. AAHPM’s recent advocacy efforts and ways you can become involved with policy are discussed in the Advocacy Update on page 6, and Bruce Chamberlain, Gail Cooney, and Chris Acevedo unravel the specifics of face-to-face encounters on page 11. Finally, read about AAHPM President Ron Crossno and his encounter with the “presidential seal” on page 16.
Read the full issue here. (Along with the redesign, we’ve gone to a digital vender to make each issue more interactive and functional.) What do you think about the new look? What more would you like to see in the Quarterly? I know I can speak for the rest of the AAHPM Quarterly Editorial Board in saying that your opinion is highly valued and much appreciated as we continue to refine content in the newsletter.
Sometimes when you think outside the box with the right intentions, things happen for the good. The session “Showcase Canada: Introducing Canadian Initiatives in Hospice Palliative End-of Life Care was a great overview of such a vision. The presentation was dispersed with great facts about Canadians and great pictures of many areas I want to add for my next trip.
In Canada, the current median age is 40 and the life expectancy is 81.29 years with 80% of the population living in an urban area. Health care is publically funded with very little private insurance. Did you also know that Canadians like to talk about famous Canadians such as Justin Bieber? Baby, Baby, Baby OH or is that eh?
Interestingly I took a trolley tour of Vancouver yesterday, the tour guide spoke of how he is covered by his wife’s medical plan and that if he had to buy insurance it would only cost him $110.00 per month and all things are covered including medications. He stated even surgery for any diagnosis. I have not formally checked this, but this made me wonder, how can this be possible?
I was intrigued because in many conversations in the United States we compare ourselves to this system and currently in a health care reform period. So how can you cover someone for $110 a month and they feel supported and cared for according as my trolley driver? I am open to discussion.
In 1990, the Canadian Hospice Palliative Care Association was established and in 2004 Compassionate Care Benefits were enacted, a Canadian federal program providing income for caregivers. It has limitations:
- Limited to 6 weeks; and
- patient should have 6 month diagnosis; but
- the benefit can be used by multiple family members.
A Canadian national program allows a 6 week paid leave by the employer but no protection for the job, different from those who live in the United States who can apply for FMLA (Family Medical Leave Act) which is a 12 week program that does not pay for your time away from work, but does protect your job. There is also another program (at least in California) CESLA which allows for use of sick time (percentage) and not vacation time, to be away and care for family members. The CESLA program was unknown to me until I needed to care for my father last year and is not just for end of life care. It appears no matter where you live there is no perfect answer but that there are different levels of support. I think many programs are not known about until the need arises which makes our understanding and knowledge of these programs even more important to help families care for their loved ones.
I think with all the efforts put forth and as we try different options outside the box, we will someday be able to provide such support. I think this supports the palliative care programs as they try to bridge the care of patients from diagnosis to death. In the meantime, Canada has an online resource for that provides “Support and information on palliative and end-of-life care, loss and bereavement for patients, families and health care providers” at www.virtualhospice.ca. Part of the website has an “Ask the Professional” where anyone can ask a question and within 3 days receive an answer. Check it out. You can also follow their efforts on Facebook as well with the continued development Their efforts continue with the expansion of their Model to Guide Hospice Palliative Care to now include pediatrics.
Thanks to Vancouver for hosting the conference and for sharing their hard work.
JPSM has announced a new call for brief reports explaining the results of quality improvement initiatives in palliative care. JPSM associate editor David Casarett and members of the AAHPM Quality Task Force were puzzled by the dearth of good information about what quality improvement innovations programs are finding successful. They realized that there aren’t many good venues for sharing the results of quality improvement initiatives, since the journals typically focus on publication of more traditional research. Thus, the idea was born for a special JPSM series on quality improvement, which will review submissions against criteria appropriate to quality improvement, not research. This series is aimed at sharing quality improvement initiatives in hospice and palliative care so that we begin to build a shared body of knowledge about what works (or doesn’t) to improve hospice and palliative care.
If your program has a quality improvement innovation of which you are proud, please take the next step and share it with your colleagues via the JPSM series. Submissions are due April 15, 2011. More information about the call.
The 100th issue of PC-FACS, an AAHPM signature service, represents a milestone. Celebrating this century issue, Editor-in-Chief Amy Abernethy commented on trends in palliative care since the digest’s inception. Read the 100th issue of PC-FACS.
(1) Increasing acceptance of palliative care as a discipline. The palliative care philosophy now extends into diverse settings including mainstream medicine. Once identified with end-of-life care, palliative care now defines care delivered appropriately throughout complex life-threatening illnesses.
(2) Systematic development of an evidence base, and iterative refinement of a toolbox, for palliative care practice. Research now includes rigorous randomized controlled trials and systematic reviews as well as observational studies, and addresses a wide spectrum of clinical issues and outcomes ranging from quality of life to health service utilization.
(3) Basic science exploration. Complementing clinical studies, basic science can provide insights into, and a biological underpinning for, clinical observations. Bidirectional conversation between basic scientists and clinicians will help develop, evaluate, and refine the next generation of interventions, and continuously improve quality and outcomes.
(4) Examination of quality. Efforts to define quality will allow us to benchmark clinical practice, advance/improve standards, identify effective approaches, and disseminate best practices.
Inside the Process of Authoring a Book: Diane Meier on Palliative Care: Transforming the Care of Serious Illness
Our recent book, Palliative Care: Transforming the Care of Serious Illness (Jossey-Bass, San Francisco 2010), has been a long time coming. I got the invitation from my co-editors Stephen Isaacs and Bob Hughes of the Robert Wood Johnson Foundation over three years ago. The book was to be another in an annual series of books on health reform in areas of significant investment by the Foundation. Prior volumes addressed the Campaign for Tobacco Free Kids and School-Based Clinics, among others. I was asked to both write an introductory essay placing the field in context, and to help select a series of previously published articles for reprinting in the volume. The audience for the book was a matter of some discussion- we settled on the educated public and, we hoped, health care policy makers. The reprints were to serve as the signal and seminal pieces that exemplified the evolution of the field from its inception to its current status.
Sounded simple enough.
Many, many, hours and three years later, we had a draft ready to go press. The articles were chosen with a great deal of input from colleagues in the U.S. and around the world and lots of great pieces of writing had to be left out for lack of space. My essay started with the roadside hospices for the Crusaders of medieval times and ended before the passage of the 2010 Accountable Care Act and I learned way more than I anticipated about the threads that contributed to our field now- the 14th century origins in church-sponsored hospitals for the poor and hopelessly ill; the evolution of the place of death from a familiar experience to a mistake in the “medical model” of the modern world; the new science of pain and pain management in the 1970’s; the revolutionary and determined roles of three middle aged women (British nurse, social worker and physician Cicely Saunders, Dean of Yale University School of Nursing, and University of Chicago physician Elisabeth Kubler Ross) in a male dominated medical business culture; and the power of a federal payment mechanism (the Medicare Hospice Benefit) as a mediator of social change. The development of the field of palliative care as an approach to the human experience of illness and disability stands on the shoulders of at least a thousand years of social evolution. Humbling. It helps to understand what came before in order to think about what should happen next. Some people want to use the book in colleges and universities and Schools of Public Health. Hope for the future.
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