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Care at the Close of Life: Stephen J. McPhee, MD, and Margaret A. Winker, MD, discuss the new JAMAevidence book Care at the Close of Life: Evidence and Experience. Please refer to the JAMA Patient Page on palliative care when listening to this podcast.
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Care at the Close of Life: Stephen J. McPhee, MD, and Margaret A. Winker, MD, discuss the new JAMAevidence book Care at the Close of Life: Evidence and Experience. Please refer to the JAMA Patient Page on palliative care when listening to this podcast.
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Segment:0 .
>> This is Joan Stephenson, Director of Medical News for JAMA. We are proud to announce a new book in the JAMAevidence series. "Care at the Close of Life Evidence and Experience" offers evidence-based and clinically expert guidance on caring for patients with life-limiting illnesses. The book thoroughly updates the 42 journal articles originally published as JAMA's acclaimed "Perspectives on Care at the Close of Life" series and features never before published content. Today we are speaking with two of the "Care at the Close of Life" editors, Dr. Stephen McPhee and Dr. Margaret Winker.
Dr. McPhee, Dr. Winker, why don't you introduce yourselves to our listeners? >> Hello. My name is Dr. Steve McPhee, and I am a Professor of Medicine at the University of California in San Francisco. >> Hello. My name is Dr. Margaret Winker, and I'm Deputy Editor and Online Editor at JAMA. >> Dr. McPhee, how did the JAMA series "Perspectives on Care at the Close of Life" begin? >> So, "Perspectives," the section in JAMA on which our new book is based, was really the brainchild of Steve Schroeder, President, and Rosemary Gibson, Senior Program Officer, at the Robert Wood Johnson Foundation.
If I remember correctly, during a breakfast meeting with Rosemary she told me that First Lady Rosalyn Carter in discussing their foundation's new program called "Last Acts," had suggested to her that, I think based on her own experience with terminal care for her own mother or father, that clinicians and physicians in particular needed better education in end-of-life care. Then I think what happened was that both Steve and Rosemary talked to Dr. Catherine DeAngelis, the editor of JAMA, and suggested that a series of articles modeled on the successful clinical crossroad section might be in order.
This proposal was enthusiastically received by Dr. Cathy DeAngelis, who then appointed Dr. Margaret Winker, Deputy Editor at JAMA, to pursue the concept, and then Rosemary came to me with the idea and, of course, asked me to write a grant. So, Mike and Steve and I then wrote a one-year grant to the Robert Wood Johnson Foundation to support the time for the UCSF editors and staff for the development of the Perspectives model and the opening editorial and then the first six articles.
At the end of that year the Foundation was very pleased with the results and re-funded us for an additional two years. Then with a change in leadership and priorities at the Robert Wood Johnson Foundation, we had to go looking for support elsewhere, and Dr. Mark Smith to our Senior Program Officer, Ms. Jan Eldred at the California Healthcare Foundation, stepped in to sponsor the next four years of our work on Perspectives, and, in addition, the Archstone Foundation through Mr. Joseph Prevratil, its President, and our Senior Program Officer, Ms. Elyse Salend, stepped in to co-sponsor the last two of those four years.
So, in total we had seven years of funding for the UCSF editors for the development of the 42 articles, which appeared bi-monthly over the next seven years in JAMA, and I think it's no surprise that many of the authors we recruited for Perspectives, and that's our chapter authors for this book, were members of our Last Acts group, and they included Dr. Susan Block, Dr. David Weissman, Jim Hallenbeck, Charles Von Gunten, Andy Billings, and two of my co-editors, Mike Rabow and Steve Pantilat.
>> Dr. Winker, what were your goals for this series of palliative care articles? >> Our goals were to provide an evidence-based, comprehensive series for primary care physicians, clinicians, and specialists to give them knowledge and tools that they need to take better care of patients who are facing the end of their lives. We wanted the information to be evidence-based but also personal, grounded in the experiences of a real patient and family. Ideally, one would always have an experienced mentor at one's side who knows the literature and can teach the bedside approach one-on-one, but studies have shown that few physicians have the benefit of this kind of hands-on learning during training or later on.
They need to learn this experience to care in some other way. Who better to learn from than world-renowned experts in these fields, and these experts have authored the chapters in this book? >> Why was it important for you to include the patients' stories in their own words? >> The way that Perspectives worked was that the editors would find a problematic case that raised an important palliative care issue, such as intractable nausea and vomiting or psychological considerations, growth, and transcendence at the end of life, and then one of us, usually Amy Markowitz, would go and obtain consents to interview patient's family caregiver, and clinician.
The clinician could be a doctor, a nurse, a social worker, a chaplain, etc. She would go interview them armed with a set of questions that the editors had developed around the issue, and the goal was to get their different perspectives, literally, on the issue. Like Kurosawa's film, "Rashomon," this triangulation is the best way to arrive at the truth of any complex situation like end-of-life care. Including the patient's voice, as well as the voices of caregiver and clinician, was also a means of adding reality, vibrancy, and poignancy to the clinical issues, and I think it makes our book unique among the palliative care texts now available.
>> The book has sections called "Words to Say" that provide examples of dialogue clinicians can use with patients and with family members. How can clinicians improve communication with patients at the end of life? >> Clinicians are often afraid to discuss with patients and their families the important issues that arise as the end of life approaches. They are, mistakenly it turns out, afraid that doing so will take away the patient's or the family member's hope; when it has been studied, the opposite seems to be true.
For almost all patients, such discussions are often desired and stimulate important decisions around guardianship, legacies, trusts and wills, funeral desires, etc. So, our very first section in the book concerns communications issues and includes wonderful chapters on the first chapter "Initiating End of Life Discussions with Seriously Ill Patients" addressing the elephant in the room, the elephant so often ignored and danced around by clinicians and families as death approaches.
This article's and chapter's author is Dr. Timothy Quill. The second chapter is "Beyond Advanced Directives," advanced directives being what most clinicians concern themselves with, DNR orders, etc., but this chapter is called "Beyond Advanced Directives-Importance of Communication Skills for Care at the End of Life," by Dr. James Tulsky. The third chapter is "Decision Making at a Time of Crisis Near the End of Life" by Dr. David Weissman, and the fourth, "Dealing with Conflict in Caring for the Seriously Ill" by Drs.
Tony Back and Bob Arnold. Including the many boxes of words to say and not to say throughout the book was a deliberate request by us as editors to have our expert authors help clinicians open these important conversations in a helpful and non-threatening manner. >> What resources are available on the JAMAevidence site that relate to care at the close of life? >> There's a wealth of additional content online at JAMAevidence.
Each chapter ends with an interactive quiz so that you can immediately reinforce what you learned, or you can take the quiz first to determine where your knowledge strengths and weaknesses are. Education guides are slide sets summarizing chapter content that can be viewed online are downloaded and edited for teaching. New education guides will be posted every quarter. Audio podcasts by chapter authors will condense the main points of the chapters into a 10-minute overview. New podcasts will be posted every quarter.
The glossary with more than 200 terms listed in the back of the print book will be online, and each time a term in the glossary is used in the book, it will be linked to the definition, making it easy to learn new terms without navigating away from the content. All care at the close of life content can be incorporated into an institution's curriculum through the JAMAevidence custom syllabus. All figures, tables, and boxes can be printed, emailed, or saved using My JAMAevidence feature, and all references will link to the PubMed abstracts to easily get more information about a particular study.
Of course, the book will be fully searchable making it easy to find concepts quickly as new situations arise and integrated with the other JAMAevidence books, the Rational Clinical Exam, and the Users' Guides to the Medical Literature. As with all JAMAevidence books, subscribers will be able to personalize their homepage and save their preferred settings, and as an after launch there will be audio recordings of the patients who have shared their stories for the series, making the personal stories of patients even richer. >> What else is unique about "Care at the Close of Life?" >> In the past, many physicians have learned about end of life care from another physician, often at a dying patient's bedside.
However, palliative and end-of-life care has a body of knowledge based on research just like other branches of medicine, and that evidence forms the basis of this book. At the same time, how one actually puts this evidence into practice is at least as challenging for end-of-life care as it is for other branches of medicine. This book also provides practical tools and words to say to help the clinician deal with many more situations than they might have faced during training. This book should help give primary care physicians, specialists, and clinicians confidence that they can provide excellent care for patients at the close of life, which could be just as rewarding for physicians as caring for patients at other times in their lives.
>> Is there anything else JAMAevidence users should know about palliative care? >> Well, palliative care was probably best summarized on a general patient page that appeared in September 20 of 2006. It talks about it as therapy that's focuses on "decreasing pain and suffering," I'm quoting from this, "by providing treatments for relief of symptoms along with comfort and support for patients of all ages. Palliative care uses a team approach that involves the treating doctor, the family, and other healthcare professionals and social services.
Hospice care, which involves helping ill individuals and their families during the last period of life is an important part of palliative care," and the patient page then features sections on pain management, symptom management, emotional support, spiritual support, etc., and some nice links to Hospice Foundation of America and elsewhere. I would say that in addition to that, there's been a tremendous growth not only in hospice, but as noted in the book's preface, a rapid growth of the field called palliative care.
When the prospectus section began in 2000, only about one in four of U.S. hospitals had any kind of palliative care service. This was usually a pain management service. Now, more than half of U.S. hospitals have a dedicated palliative care service, and almost all of the hospitals with more than 250 beds have such services. Second, board certification in hospice and palliative medicine has been established.
It was established by the American Board of Medical Specialties in 2006, I believe, and the first certifying exam took place in 2008. Third, there are now fellowships in palliative medicine. When we started Perspectives, there were none. Now the American Association of Hospice and Palliative Medicine website lists dozens upon dozens of them by state. Fourth, palliative care is now a criterion for rating hospital quality as assessed by the U.S. Joint Commission, and then finally, internationally palliative care has become a central feature of deliberations.
Many countries like Japan and Italy are now undertaking and attempting to improve the quality of care for their growing populations of elders and seriously ill patients. Our book, "Care at the Close of Life Evidence and Experience," is ideal for people working in all of these areas-hospices, hospital palliative care programs, fellowship training programs, and hospitals facing Joint Commission review, and, I believe, totally relevant internationally as well.
[Inaudible] >> That sounds great, Steve, and I would just conclude to say that we hope that readers will find "Care at the Close of Life" a valuable resource, and we look forward to your feedback about useful features and additions to the online book. Please contact us through the JAMAevidence website. We look forward to hearing from you. Thank you. >> Thank you. >> Thank you both for this introduction to a resource that should be welcomed by clinicians caring for patients with life-threatening illnesses, and for additional information about this topic, JAMAevidence subscribers can consult the online chapters of "Care at the Close of Life" and other resources on the site.
This has been Joan Stephenson of JAMA talking with Dr. Stephen McPhee and Dr. Margaret Winker for JAMAevidence.
Segment:0 .
>> This is Joan Stephenson, Director of Medical News for JAMA. We are proud to announce a new book in the JAMAevidence series. "Care at the Close of Life Evidence and Experience" offers evidence-based and clinically expert guidance on caring for patients with life-limiting illnesses. The book thoroughly updates the 42 journal articles originally published as JAMA's acclaimed "Perspectives on Care at the Close of Life" series and features never before published content. Today we are speaking with two of the "Care at the Close of Life" editors, Dr. Stephen McPhee and Dr. Margaret Winker.
Dr. McPhee, Dr. Winker, why don't you introduce yourselves to our listeners? >> Hello. My name is Dr. Steve McPhee, and I am a Professor of Medicine at the University of California in San Francisco. >> Hello. My name is Dr. Margaret Winker, and I'm Deputy Editor and Online Editor at JAMA. >> Dr. McPhee, how did the JAMA series "Perspectives on Care at the Close of Life" begin? >> So, "Perspectives," the section in JAMA on which our new book is based, was really the brainchild of Steve Schroeder, President, and Rosemary Gibson, Senior Program Officer, at the Robert Wood Johnson Foundation.
If I remember correctly, during a breakfast meeting with Rosemary she told me that First Lady Rosalyn Carter in discussing their foundation's new program called "Last Acts," had suggested to her that, I think based on her own experience with terminal care for her own mother or father, that clinicians and physicians in particular needed better education in end-of-life care. Then I think what happened was that both Steve and Rosemary talked to Dr. Catherine DeAngelis, the editor of JAMA, and suggested that a series of articles modeled on the successful clinical crossroad section might be in order.
This proposal was enthusiastically received by Dr. Cathy DeAngelis, who then appointed Dr. Margaret Winker, Deputy Editor at JAMA, to pursue the concept, and then Rosemary came to me with the idea and, of course, asked me to write a grant. So, Mike and Steve and I then wrote a one-year grant to the Robert Wood Johnson Foundation to support the time for the UCSF editors and staff for the development of the Perspectives model and the opening editorial and then the first six articles.
At the end of that year the Foundation was very pleased with the results and re-funded us for an additional two years. Then with a change in leadership and priorities at the Robert Wood Johnson Foundation, we had to go looking for support elsewhere, and Dr. Mark Smith to our Senior Program Officer, Ms. Jan Eldred at the California Healthcare Foundation, stepped in to sponsor the next four years of our work on Perspectives, and, in addition, the Archstone Foundation through Mr. Joseph Prevratil, its President, and our Senior Program Officer, Ms. Elyse Salend, stepped in to co-sponsor the last two of those four years.
So, in total we had seven years of funding for the UCSF editors for the development of the 42 articles, which appeared bi-monthly over the next seven years in JAMA, and I think it's no surprise that many of the authors we recruited for Perspectives, and that's our chapter authors for this book, were members of our Last Acts group, and they included Dr. Susan Block, Dr. David Weissman, Jim Hallenbeck, Charles Von Gunten, Andy Billings, and two of my co-editors, Mike Rabow and Steve Pantilat.
>> Dr. Winker, what were your goals for this series of palliative care articles? >> Our goals were to provide an evidence-based, comprehensive series for primary care physicians, clinicians, and specialists to give them knowledge and tools that they need to take better care of patients who are facing the end of their lives. We wanted the information to be evidence-based but also personal, grounded in the experiences of a real patient and family. Ideally, one would always have an experienced mentor at one's side who knows the literature and can teach the bedside approach one-on-one, but studies have shown that few physicians have the benefit of this kind of hands-on learning during training or later on.
They need to learn this experience to care in some other way. Who better to learn from than world-renowned experts in these fields, and these experts have authored the chapters in this book? >> Why was it important for you to include the patients' stories in their own words? >> The way that Perspectives worked was that the editors would find a problematic case that raised an important palliative care issue, such as intractable nausea and vomiting or psychological considerations, growth, and transcendence at the end of life, and then one of us, usually Amy Markowitz, would go and obtain consents to interview patient's family caregiver, and clinician.
The clinician could be a doctor, a nurse, a social worker, a chaplain, etc. She would go interview them armed with a set of questions that the editors had developed around the issue, and the goal was to get their different perspectives, literally, on the issue. Like Kurosawa's film, "Rashomon," this triangulation is the best way to arrive at the truth of any complex situation like end-of-life care. Including the patient's voice, as well as the voices of caregiver and clinician, was also a means of adding reality, vibrancy, and poignancy to the clinical issues, and I think it makes our book unique among the palliative care texts now available.
>> The book has sections called "Words to Say" that provide examples of dialogue clinicians can use with patients and with family members. How can clinicians improve communication with patients at the end of life? >> Clinicians are often afraid to discuss with patients and their families the important issues that arise as the end of life approaches. They are, mistakenly it turns out, afraid that doing so will take away the patient's or the family member's hope; when it has been studied, the opposite seems to be true.
For almost all patients, such discussions are often desired and stimulate important decisions around guardianship, legacies, trusts and wills, funeral desires, etc. So, our very first section in the book concerns communications issues and includes wonderful chapters on the first chapter "Initiating End of Life Discussions with Seriously Ill Patients" addressing the elephant in the room, the elephant so often ignored and danced around by clinicians and families as death approaches.
This article's and chapter's author is Dr. Timothy Quill. The second chapter is "Beyond Advanced Directives," advanced directives being what most clinicians concern themselves with, DNR orders, etc., but this chapter is called "Beyond Advanced Directives-Importance of Communication Skills for Care at the End of Life," by Dr. James Tulsky. The third chapter is "Decision Making at a Time of Crisis Near the End of Life" by Dr. David Weissman, and the fourth, "Dealing with Conflict in Caring for the Seriously Ill" by Drs.
Tony Back and Bob Arnold. Including the many boxes of words to say and not to say throughout the book was a deliberate request by us as editors to have our expert authors help clinicians open these important conversations in a helpful and non-threatening manner. >> What resources are available on the JAMAevidence site that relate to care at the close of life? >> There's a wealth of additional content online at JAMAevidence.
Each chapter ends with an interactive quiz so that you can immediately reinforce what you learned, or you can take the quiz first to determine where your knowledge strengths and weaknesses are. Education guides are slide sets summarizing chapter content that can be viewed online are downloaded and edited for teaching. New education guides will be posted every quarter. Audio podcasts by chapter authors will condense the main points of the chapters into a 10-minute overview. New podcasts will be posted every quarter.
The glossary with more than 200 terms listed in the back of the print book will be online, and each time a term in the glossary is used in the book, it will be linked to the definition, making it easy to learn new terms without navigating away from the content. All care at the close of life content can be incorporated into an institution's curriculum through the JAMAevidence custom syllabus. All figures, tables, and boxes can be printed, emailed, or saved using My JAMAevidence feature, and all references will link to the PubMed abstracts to easily get more information about a particular study.
Of course, the book will be fully searchable making it easy to find concepts quickly as new situations arise and integrated with the other JAMAevidence books, the Rational Clinical Exam, and the Users' Guides to the Medical Literature. As with all JAMAevidence books, subscribers will be able to personalize their homepage and save their preferred settings, and as an after launch there will be audio recordings of the patients who have shared their stories for the series, making the personal stories of patients even richer. >> What else is unique about "Care at the Close of Life?" >> In the past, many physicians have learned about end of life care from another physician, often at a dying patient's bedside.
However, palliative and end-of-life care has a body of knowledge based on research just like other branches of medicine, and that evidence forms the basis of this book. At the same time, how one actually puts this evidence into practice is at least as challenging for end-of-life care as it is for other branches of medicine. This book also provides practical tools and words to say to help the clinician deal with many more situations than they might have faced during training. This book should help give primary care physicians, specialists, and clinicians confidence that they can provide excellent care for patients at the close of life, which could be just as rewarding for physicians as caring for patients at other times in their lives.
>> Is there anything else JAMAevidence users should know about palliative care? >> Well, palliative care was probably best summarized on a general patient page that appeared in September 20 of 2006. It talks about it as therapy that's focuses on "decreasing pain and suffering," I'm quoting from this, "by providing treatments for relief of symptoms along with comfort and support for patients of all ages. Palliative care uses a team approach that involves the treating doctor, the family, and other healthcare professionals and social services.
Hospice care, which involves helping ill individuals and their families during the last period of life is an important part of palliative care," and the patient page then features sections on pain management, symptom management, emotional support, spiritual support, etc., and some nice links to Hospice Foundation of America and elsewhere. I would say that in addition to that, there's been a tremendous growth not only in hospice, but as noted in the book's preface, a rapid growth of the field called palliative care.
When the prospectus section began in 2000, only about one in four of U.S. hospitals had any kind of palliative care service. This was usually a pain management service. Now, more than half of U.S. hospitals have a dedicated palliative care service, and almost all of the hospitals with more than 250 beds have such services. Second, board certification in hospice and palliative medicine has been established.
It was established by the American Board of Medical Specialties in 2006, I believe, and the first certifying exam took place in 2008. Third, there are now fellowships in palliative medicine. When we started Perspectives, there were none. Now the American Association of Hospice and Palliative Medicine website lists dozens upon dozens of them by state. Fourth, palliative care is now a criterion for rating hospital quality as assessed by the U.S. Joint Commission, and then finally, internationally palliative care has become a central feature of deliberations.
Many countries like Japan and Italy are now undertaking and attempting to improve the quality of care for their growing populations of elders and seriously ill patients. Our book, "Care at the Close of Life Evidence and Experience," is ideal for people working in all of these areas-hospices, hospital palliative care programs, fellowship training programs, and hospitals facing Joint Commission review, and, I believe, totally relevant internationally as well.
[Inaudible] >> That sounds great, Steve, and I would just conclude to say that we hope that readers will find "Care at the Close of Life" a valuable resource, and we look forward to your feedback about useful features and additions to the online book. Please contact us through the JAMAevidence website. We look forward to hearing from you. Thank you. >> Thank you. >> Thank you both for this introduction to a resource that should be welcomed by clinicians caring for patients with life-threatening illnesses, and for additional information about this topic, JAMAevidence subscribers can consult the online chapters of "Care at the Close of Life" and other resources on the site.
This has been Joan Stephenson of JAMA talking with Dr. Stephen McPhee and Dr. Margaret Winker for JAMAevidence.
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