Video Series

Difficult Conversations
Voices From the Lived World of Illness: Advanced Cancer

CCM’s videos, workbooks and study guides have been used for teaching healthcare professionals at all stages of their careers: from students to postgraduate courses. Medical education and training programs led by CCM’s experienced faculty offer in-depth exploration of the challenges of delivering bad news; guiding difficult conversations about choices and uncertain outcomes; and developing partnerships for making what are often hard decisions.

Our materials emphasize the patient’s perspective and recognize that the language used by medical professionals can result in misunderstandings about prognosis and the risks and benefits of treatment options. CCM’s tools are designed to facilitate communication and strengthen relationships between patients and the healthcare team.

Difficult Conversations Workbook & Video: A Resource for Healthcare Professionals

CCM’s new Difficult Conversations Workbook, with its accompanying video, offers the unscripted stories of five patients facing and managing life-limiting illness and highlights their exploration of needs, preferences and goals. The content provides a framework for healthcare professionals to better understand the issues and concerns that patients identify when cure is no longer viable and treatment options are limited. The stories shed light on their expectations of physicians for clear and honest communication. The patients talk about their responsibility in understanding their prognosis, treatment options and quality of life concerns.

What Patients Are Saying about the Difficult Conversations Workbook:

“The Difficult Conversations Workbook and video is giving me the opportunity to ask myself questions that I assumed I thought about adequately but I am finding there are layers and layers. And, using them together is helping me to come to terms with my prognosis. The workbook itself is something I’ll return to regularly.”

S.H.

“I thought treatable could mean both curable and life extending. What might not be clear to a patient is that treatment, even those trials that offer promise, may not alter the course of the disease. I like the way you draw the distinction in both the video and workbook and proved helpful in my transition to palliative care.”

S.G.

“As a patient most of my own thinking about the Difficult Conversations workbook has been focused on the doctor/patient relationship—even though chapter 3 deals with family and friends. The quality of the relationships I have developed over the years with clinicians are leagues ahead of those with my family–wife and children. I think these family relationships are fully as difficult as the others and need more attention. Perhaps, because the emotional twists run both ways.”

N.F.

What Family & Friends Are Saying About the Difficult Conversations Workbook:

“The attention, worry and the need for information from family and friends initially became overwhelming. I think you’ve done a brilliant job in the way the material is organized and presented. It really does walk someone through the process and identifies a host of issues, questions to ask and information that is needed by both patient and family.”

W.G.

What Healthcare Professionals Are Saying About the Difficult Conversations Workbook:

“The DVD and workbook is beautifully presented, effective, evocative, sincere and true to our joint vision: to approach these conversations with respect and humility and to discuss life and its meaning as precursor to death and its significance. To accept the dying role takes courage and is the first and indispensable step towards finding clarity and peace. Then and only then we can move into conversations about specific actions such as preferences for resuscitation. Failure to understand that sequence is what leads to so many regrettable errors in hospitals or other settings where these conversations often take place.”

Lidia Schapira, MD
Massachusetts General Hospital/Harvard Medical School

“Every waiting room, every patient care room should have [this], every social worker, nurse, doctor and chaplain should offer [it] as part of saying to a patient and family: I’m here; we can talk; I’ll listen…”

Linda Emanuel, MD, PhD
Director, Buehler Center for Aging, Health and Society
Northwestern University/Feinberg School of Medicine

“For every patient, the best medical care is that which is tailored to one’s personal values, understanding, and goals. But for most people the task of identifying, ‘what is most important to me?’ ‘what do I need to understand to make this decision?’ and ‘how do I choose among the options?’ is not easy. This program will help each person organize their own thoughts and feelings so as to better answer those and other questions that arise, and to thereby participate more fully as an empowered patient in their medical care and treatment.

Zail Berry, MD, MPH
Hospice & Palliative Specialist
University of Vermont College of Medicine

“The Difficult Conversations Workbook creates an opportunity to identify and openly discuss end of life concerns at a time when communication is almost always difficult. The opportunity to share experiences, reassess priorities and to clarify values is inherently healing.”

Matthew Loscalzo, MSW
Executive Director, Department of Supportive Care Medicine
City of Hope
Duarte, CA

“[The Center’s] latest project in a series of gems is the video Difficult Conversations. I am both the senior advising dean at Dartmouth Medical School and Chief of Oncology at the VA, and I see much potential for the use of their video and toolkit in medical education, in improving satisfaction in practices, and in improving outcomes. We are currently doing a pilot of the video with patients at the VA and it is yielding profound insights…already. What I realize, and what Bernie and Celia are both such effective teachers for all of us about, is the words we use can have such different meanings for patients and families. With tools like the Difficult Conversation, we can get on the same page as our patients, but even better, march together into the frightening future, more aligned with each other and able to support the chaotic journeys that having cancer brings.”

Joseph F. O’Donnell, MD
Chief of Oncology, White River Junction VA Hospital
Senior Advising Dean, Dartmouth Medical School

“While the videos and checklists certainly cover important issues and communicate with graphics and very simple language that low literacy patients can understand, the difference between your video and toolkit and their materials is dramatic…. Your intervention/approach is one of pathos and humanness, and you touch people at an emotional level. You understand that patients and families make difficult and heartfelt decisions, and you open the door to communication on this level, rather than a pure cognitive and logical one. Your intervention is clearly not duplicative of what else is out there, but rather complementary and certainly essential.”

Susan Bauer-Wu PhD, RN
Emory School of Nursing & Emory Winship Cancer Institute
President, Society of Integrative Oncology

“The patients were the strength of the program. The journaling in the toolkit would work for some patients and not for others. The emphasis on communication between patients/physician, thinking I (patient) am part of a team, and focus on patient goals rather than medical goals was very good.”

Allan Ramsay, MD
Director, Palliative Care Services, Fletcher Allen Health Care
Professor, University of Vermont College of Medicine

“We (he, his wife, and me) watched chapters 1-3, and it only took a few minutes. We were crowded around the clinic computer. He told me that this was helpful and some of the exact phrases that the patients used resonated with him. He went on to tell me how he first learned about the news, the unhelpful statistics that were quoted, and the experience he has had with various friends (not all of whom could find helpful words or ways to talk to him). Overall, it was a robust ‘icebreaker’ for some helpful dialogue!”

Michael J. Fisch, MD
Chair, General Oncology
The University of Texas M.D. Anderson Cancer Center

“Your project is paradigm-changing. Others have demonstrated that video based decision-aides are more effective than paper based decision aides, but these projects have exposed patients to narrow scenarios instead of true patient stories. Similarly, computer-or paper based decision aides have given patients cognitive information about their choices without attending to the emotional side of decision making. Given the strengths of your video, we are very excited about taking this project to the next level to test it in patients and determine whether it has potential to change practice and more importantly, improve patients’ lives.”

Alexi Wright, MD
Gynecological Oncology Program Dana Farber Cancer Center | Brigham and Women’s Hospital

“It was my privilege to be a part of the care team for Noel Fritzinger (patient in the film), who recently died from metastatic prostate cancer. I know it was one of his wishes to support this initiative as much as possible and he gave me his consent to continue to be able to identify him by name…. During my tenure as his oncologist we had many conversations about the end of life. He was an active participant at the very beginning of this Initiative and shared it with me. I was and continue to be very impressed with the goals and materials of this program. It is a key need in our community and many others to help physicians and nurses initiate these difficult but universal conversations. I find the materials and language very helpful and reassuring for patients and their families. The Toolkit is especially helpful in identifying a patients goals and allowing us to talk about them freely in order to create and develop a specific plan of care. Living with an incurable disease is a process that has many phases and people’s goals change regularly as they move from phase to phase. This program acknowledges that and aids people and their families as they transition. I expect it to be a useful tool at every phase, from diagnosis to treatment to end of life. It is my pleasure to support the Difficult Conversations Initiative to the best of my ability.

Mary Chamberlin, MD
Dartmouth Hitchcock Norris Cotton Cancer Center/Dartmouth Medical School

The Difficult Conversations Workbook is available in interactive form here at SpeakSooner.org, as well as for hard copy purchase on our Products page. To find out more about CCM’s Difficult Conversations education and training programs please contact us.

 

 

 

Voices From The Lived World of Illness: Advanced Cancer
A Guide for Medical Education

The first video in the Voices From The Lived World of Illness series, Advanced Cancer, transports the viewer to the moment of diagnosis–the first chapter in the stories of four patients whose lives have been interrupted by incurable cancer. “I could write a textbook based on the remarks made by these patients,” remarked Dr. Lidia Schapira, a practicing oncologist at Massachusetts General Hospital and assistant professor at Harvard Medical School, who has used the video to educate clinicians about the importance of building relationships with patients. Dr. Schapira notes, “It is important for those of us in the profession doing this work every day, to take a couple of steps back and reflect on the human side of the cancer experience. To really take a plunge into the world of illness instead of being caught up in the busy-ness of ordering and interpreting tests, writing treatment orders and solving problems. Since I don’t have to ‘doctor’ these patients I can actually listen with more curiosity and spontaneity. I wish I could listen as well to my patients every day… It is true that in the act of listening we feel the pain, concerns, fears and hopes of these four courageous people who shared their wisdom.”

Over the course of the video, the viewer hears firsthand from these four patients about their experiences of illness and treatment. They speak freely about such topics as their expectations of doctors, the impact of their diagnosis on relationships and sense of self, their attitudes toward spiritual issues, their fears about death and dying, and their hopes for treatment and beyond.

Particular attention is directed towards the impact of healthcare professionals’ words and manner and the complexities of communication in the doctor-patient relationship.

Advanced Cancer video is available for purchase on our Products page. To find out more about CCM’s Advanced Cancer education and training programs please contact us.

What Healthcare Professionals Are Saying About Voices From The Lived World of Illness:

“The content of the film … provokes deep discussion of communication barriers, facilitators and the use of effective language between patients and their caregivers. I plan to use it extensively in my teaching of these topics at Dartmouth Medical School and to encourage my colleagues at other medical schools to incorporate its use. If we can do a better job of connecting, of understanding each other, of hearing needs and concerns, and of unleashing inner strengths to promote healing, we will surely do a better job to lessen suffering and improve outcomes…”

Joseph F. O’Donnell, MD
Professor of Medicine, Dartmouth Medical School
Hanover, NH

“I can think of a million ways to teach with this material… small group teaching of medical oncology fellows, students and residents.  [And] I’m eager to bring the video to colleagues who work intimately with patients and oncologists but who are not clinicians.”

Michael J. Fisch, MD, MPH, FACP
Director, M.D. Anderson Community Clinical Oncology Program
Associate Professor, General Oncology
The University of Texas, M.D. Anderson Cancer Center
Houston, Texas

“The film is an excellent portrayal of living with cancer, as experienced by four individuals. The efficacy of the movie is in establishing a connection with the individuality of each patient…Congratulations to the Institute for producing this thoughtful and compassionate film.”

Mark Hoffman, MD
Long Island Jewish Medical Center, New Hyde Park, NY

“I think this shows great work and can serve as a great tool for both those in training as well as more seasoned practitioners… I was impressed with the way they were able to talk about communication and the need to use common language.”

Tim Moynihan, MD
Assistant Professor of Medicine, Mayo Clinic
Director, Palliative Care Consult Service
Associate Medical Director of the Mayo Clinic Hospice
Rochester, Minnesota

“A wonderful film and the patients were incredible. I am sure it will become a very useful learning and teaching resource, not only for physicians and nurses, but for patients and relatives.”

Liliana De Lima, MHA
Executive Director
International Association of Hospice & Palliative Care
Houston, TX

“The magic of the human experience is laid bare; vulnerability, fear, resiliency, the alchemy of meaning making and ultimately transcendence.  Experience illness being transformed as the human connection demonstrates what it truly means to have a voice of the ages.”

Matthew Loscalzo, MSW
City of Hope
Sheri and Les Biller Patient and Family Resource Center
Duarte, CA

“It is a valuable teaching tool, particularly for medical and nursing students.”

Ira Byock, M.D.
Director of Palliative Medicine
Dartmouth Hitchcock Medical Center
Hanover, NH

“I hear a challenge from [the patients in this film] for physicians to walk with the patient and to be present. It is my experience that the patient who has accepted the serious nature of their illness still wants to live, to be heard, acknowledged and to be loved. Cure is no longer an issue, so neither is failure, except the failure to be compassionate and present. Every doctor and caregiver can offer these gifts and thereby help and heal.”

Ronald “Skip” Durning, MD
Director, Hospitalist Service
North Adams Hospital
North Adams, MA