Empathetic & Informative Guidance
THE RIGHT INFORMATION, DELIVERED AT THE RIGHT TIME, EQUALS AN ENGAGED AND EMPOWERED PATIENT.
Every patient’s journey through cancer is unique, but one thing remains universal—the need for objective and trustworthy information, as well as critically important support.
My Cancer Advocate is a not-for-profit organization whose mission is to lighten the burden for cancer patients and their families by providing empathic and informative guidance to help patients effectively and efficiently navigate the difficult journey ahead.
The Cancer Advocate is a highly trained professional who is intimately familiar with the health care system and who serves as a vitally important resource to the patient and his or her family. The Advocate ensures access to the right information and the most appropriate resources—beginning at diagnosis and continuing through active treatment and beyond.
Though the Advocate’s first and foremost concern is patient empowerment, he or she is well prepared to help with numerous challenges, including:
- Selecting a cancer care team and facility for treatment
- Understanding one’s diagnosis and treatment options (including attending physician appointments if requested)
- Identifying trustworthy and objective sources of information
- Getting second opinions when appropriate
- Talking with family and friends about your disease
- Understanding the intended goals of treatment
- Anticipating/managing short-term and long-term side effects of treatment
- Sharing objective information regarding the potential role of complementary therapies
- Helping you to manage the emotional distress that often accompanies cancer
- Working with you to sustain hope throughout the journey
- Locating additional payment options if treatment is unaffordable
- Moving forward if initial treatments fail
- Dealing with the challenges of survivorship
- Managing difficult end-of-life issues
Key Research Illustrates the Benefits of Informed Patients
…Informed patients feel a sense of control, can cope with uncertainty about their health, follow their plans of care more closely, and recover faster and more thoroughly…Bevan & Pecchoni
Highly activated patients are two or more times as likely as those with low activation levels to prepare questions for a visit to the doctor; to know about treatment guidelines for their condition; and seek out health information…Hibbard and Greene
Patients should be educated about the essential role they play in decision making and be given effective tools to help them understand their options and the consequences of their decisions. They should also receive the emotional support they need to express their values and preferences and be able to ask questions without censure from their clinicians.Michael J. Barry, M.D.
John Leifer understands how the health care system works, and what is required to navigate it successfully. He has spent more than 30 years seeking to bring about positive change within the health care as a senior health care executive, consultant, academician, and author.
John understands not only how the health care delivery should work, but how it works in real life.
An outspoken advocate for patients’ rights, John has published widely on the need for patients to receive appropriate, safe and effective care – a topic covered in detail in his book, The Myths of Modern Medicine: The Alarming Truth About American Health Care (Rowman & Littlefield, 2014). His willingness to challenge conventional wisdom and seek out innovative solutions to the complex problems inherent in the health care industry has made him a frequently cited expert on health policy issues by numerous national publications.
John’s passion for advocacy was evident as early as 1992, when he founded and published The Leifer Report, a cutting-edge health care journal. Contributors included President Bill Clinton and Former House Speaker Newt Gingrich, as well as Pulitzer Prize-winning journalists, industry visionaries and other key influencers within the health care industry.
John has held faculty positions with both the University of Kansas School of Medicine’s Health Policy and Management Program, where he served as the inaugural executive in residence, and the University’s William Allen White School of Journalism. In 2006, he won the Kansas Health Foundation Excellence in Teaching Award.
His quest to better understand the psycho-social spiritual needs of cancer patients caused Leifer to return to school in 2009 to complete a master’s degree in Positive Psychology from the University of Pennsylvania. His most recent book builds upon that experience.
Lori Lindstrom Leifer, MD
Lori Lindstrom Leifer, MD, is both a cancer doctor and a cancer patient. As a radiation oncologist, she has provided care to patients for the past 25 years.
As a faculty member with a National Cancer Institute-designated Cancer Center, Lori sees a broad array of cases. Prior to her academic affiliation, Lori spent many years serving a largely indigent population in a mission-driven practice.
In 2013, Lori discovered a lump in her breast. So began a journey through diagnostic testing, multiple surgeries and now into survivorship. Hence, she has both the mind and the heart to work with cancer patients.
After receiving her Doctor of Medicine from the University of Kansas School of Medicine, Lori went on to complete her training at both the University of Kansas and Tufts-New England Medical School in Boston. In addition to her clinical practice, Lori holds a teaching position as Assistant Clinical Professor at the University of Kansas School of Medicine.
Lori is a member of the American Society of Therapeutic Radiation and Oncology, the American Society of Clinical Oncology and the Alpha Omega Alpha Medical Society.
After You Hear It’s Cancer
When your doctor utters the word “cancer,” life changes in an instant. It is a moment when time stands still, a moment laden with anxiety and uncertainty. A new journey is beginning, and it is one for which you are likely ill prepared.
For a newly diagnosed patient, it is like going on a trip without knowing the destination or method of transportation, with no map to guide you and no planned arrival time. It is little wonder that patients often feel overwhelmed and unable to participate in critical decisions about their care. Our logical minds stop working just when we need to be thinking with absolute clarity about our next steps.
After You Hear It’s Cancer is a survival guide for this difficult time. It helps you see through the initial fog of distress, anticipate the curves and bends in the road ahead, and make the right decisions for you and your family. This book covers a broad range of topics, from the selection of your care team to critical decisions at the end of treatment.
John and Lori integrate cutting-edge research with the perspectives of numerous cancer patients to yield an empathetic but pragmatic handbook that should be required reading for all cancer patients and their caregivers.
After You Hear It’s Cancer
If you are a cancer patient, caregiver, or a cancer care provider, this is one book you must read!Daniel P. McKellar, MD, FACS
…an insightful and compassionate navigation path from diagnosis to closure after you hear it’s cancer…Richard Carmona, MD, MPH, FACS
…this book will prepare you to help your friends, family or yourself should any of you hear the words, “You have cancer.”Annette Bloch
…a wealth of information to assist patients and their families navigate the complicated cancer care system and to participate in the decision making process for their own care.Robert Carlson, MD
…a very complete and updated guide to the complex world of cancer diagnosis, care, and treatment.Julie M. Vose, MD, MBA
After You Hear It’s Cancer is a reliable GPS and bright light with which to navigate that terrain. This hopeful, empowering book is worth giving to every person diagnosed with cancer.Ira Byock, MD
Four Lives Changed ForeverHear how four lives were forever changed by a cancer diagnosis as 3 patients and a surviving spouse discuss the journey through cancer. The video moves from the moment of diagnosis thru the grace bestowed by a difficult journey with many hurdles along the way.
Frequently Asked Questions
What types of issues are appropriate to discuss with my Advocate/coach?
Your Cancer Advocate is prepared to address an extensive list of issues that arise during the journey through cancer. Questions may relate to clinical, financial, emotional, spiritual, or functional issues. When a question is outside of your CA’s expertise, he or she will refer you to a trusted resource that possesses specific knowledge about the issue you have raised.
When can a Cancer Advocate be most beneficial?
An Advocate brings a fresh perspective plus innumerable resources that can benefit patients and their loved ones at any point in the cancer journey. Many people find advocacy/coaching particularly valuable when:
- First learning of their diagnosis and struggling to make critically important decisions regarding the selection of their care team, as well as participation with their doctors in shared decision making regarding treatment options
- Attending the first consultations with specialists to learn more about their disease and options
- Adjusting to the rigors of active treatment, as well as the disruptions to one’s life
- Completing treatment and either experiencing angst over fear of recurrence or over reentry into life
- Dealing with recurrence and the need for subsequent treatment
- The goals of treatment change from cure to control or comfort
How does the Cancer Advocate measure his or her success?
Cancer Advocates measure their success by gauging the patient’s progress across a number of measures, including:
- Improvement in quality of life and life satisfaction
- Diminished distress, anxiety, or depression
- Increased health literacy to better understand and converse effectively with doctors and nurses
- Potential improvements in the patient’s functional status
- Potential improvement in clinical outcomes due to increased compliance with the treatment plan
Beyond these goals, Cancer Advocates work with patients to ensure that a focus also remains on their broader life goals, including: professional aspirations, relationship issues, financial objectives, and spiritual/faith issues, among other concerns.
What type of medical advice will the Cancer Advocate provide?
None. The Advocate is not a clinician, and thus will direct you to the most appropriate resources from which/whom to get answers. An advocate can help you formulate the right questions to ask of your doctors—often resulting in more satisfying and efficient discussions.
What is the difference between a Cancer Advocate and a counselor?
Both professionals are concerned with the well-being of their clients. Whereas a counselor normally refers to a licensed mental health professional, an Advocate is focused on the full spectrum of issues that impact how you successfully navigate the journey through cancer. Cancer Advocates focus on empowering their clients with actionable information and resources. They will address cancer-induced distress, but will refer patients to mental health professionals when more serious, underlying issues are identified.
Do I need a Cancer Advocate if I have access to a nurse navigator?
Nurse navigators can be invaluable in ensuring continuity of care while improving patients’ ability to navigate the system, which is why your Cancer Advocate will work closely with your navigator (or connect you to one if needed). The Advocate’s job, however, encompasses a broad array of responsibilities designed to ensure that you have the resources, knowledge, skills, and tools needed to manage the journey through cancer.
How long do advocacy/coaching sessions last, and how often would I meet with my Cancer Advocate?
The operative word in the relationship between the Cancer Advocate and the patient/family caregiver is flexibility. Interventions must be tailored to meet the needs of all. Formal advocacy/coaching sessions are generally one hour in length and can be conducted in person, over the phone, or by using Skype. The frequency is based upon your needs. Patients may also wish to establish a relationship that involves e-mail and other forms of shorter, yet more frequent contact.
Will my insurance cover my Cancer Advocate?
In all probability, no, this will be an out-of-pocket expense … though conversations are under way with insurance companies and major employers regarding coverage.