Toni Bernay e-interviewed by Josephine Anna Kaszuba Locke (August, 2006)
Saar Porrath, MD, and his wife Toni Bernay, PhD, began writing When It's Cancer after Saar was diagnosed with plasma cell leukemia. Porrath's and Bernay's book is a remarkable achievement, written from the heart, sharing and caring about those who face the words "You have cancer". It reflects high standards in patient support, medical care, research, and quality of life information. The authors believe that cancer patients 'who get the best treatment results and quality of life are those who are most informed, proactive and involved in the process'. To help people more effectively manage the disease, potential treatments, and its overwhelming life changing complications, Drs. Porrath and Bernay developed the Personal Cancer Management System, which they explain in their book.
Toni Bernay, PhD, serves as president of the Porrath Foundation for Cancer Patient Advocacy, and is a principal in the Leadership Equation Institute consulting firm. Saar Porrath, MD, was a 'preeminent breast oncologist at the forefront of numerous advances in breast health and care.' In 1983 he established the Woman's Breast Center, and has been recognized for his outstanding contributions to health care.
Dr. Porrath wrote, 'Curing cancer is not a cut-and-dried matter of diagnosis and prognosis based on medical facts, risk/benefit ratios of various treatments, the patient's stage of cancer, and the clinician's analytical and skill level. Two other critical factors must be entered into the equation that can determine success or failure. They are the patient's ability to know his priorities and values in life and the patient's capacity to proactively become involved in his own diagnosis and treatment. Though we can rarely be sure of a cure, with a significant level of patient involvement we can predict better treatment results and higher quality of life, regardless of the ultimate outcome'.
Q: Step 1 of your Personal Cancer Management System (PCMS) involves the selection of the patient advocate. Family members are recommended. Wouldn't the closeness of the relationship hamper such advocacy?
A: In chapter 1 in When It's Cancer ... 10 Essential Steps to Take After the Diagnosis, you'll notice that we discuss two kinds of advocates; personal and professional. The personal advocate (page 23) is that spouse, best friend, adult child, etc. who steps up and has the time, emotional investment and personality to be with and for the patient as they walk the cancer road. It may be one person or several, depending on the situation.
The Cancer Patient Advocate (CPA) is discussed on page 25 and elsewhere. This is a separate person, a healthcare professional, who fills a critical gap in cancer care ... that of the quarterback, coach and guide who can help patients and caregivers sort through the overwhelming amount of information and options presented, enabling them to make wise medical, complementary medicine, QOL and lifestyle decisions from diagnosis to recovery or end of life. Your can get further information on Cancer Patient Advocates and see film clips of them at work on our Porrath Foundation website.
Q: Obtaining copies of medical records is covered under Start Your Cancer Notebook, with the comment that 'new federal guidelines guarantees' a patient's right to that information. What can a patient do if the establishment hems and haws about giving out such records?
A: Be matter of fact about the federal guideline guarantee and being given whatever records you request. If you encounter resistance, ask for that person's supervisor and state your request to them. Most offices now respond positively to these requests, albeit they may take their time and ask for a payment for processing. My best advice is to let the office and the doctor know the day of the exam that you want a copy of any test report (e.g. radiology, pathology lab, consultation, etc) and, if you feel you need it, the actual films/computer disk(the form that x-rays now often come in) themselves. It's much easier to build a medical file at home than to have to collect items when needed.
Q: I appreciated the advice that what other people 'tell you is valid for them ... ignore them and determine what 'quality of life' means to you personally.' Please elaborate on this.
A: Cancer is becoming more and more complex. Each diagnosis has many sub-diagnoses. Each one of these has several valid treatments, each with their own rate of success and failure. Each physician has a treatment approach that he or she prefers. They have more or less experience and rate of success in using this "favorite recipe" or protocol, which is based on their belief in a particular "guru's" research and their own clinical experience. Each treatment has side effects, which have their own ways of being managed by either conventional and/or complementary medicine means. It's important to collect information on the medical realities of your condition and the treatments available. Sources of information can come from research, second opinions, survivors and more. Once you've gathered what you need, most are faced with choosing between, not one, but several options which are all medically effective depending on your diagnosis, stage of disease, age and health. They all come with an assortment of quality of life and lifestyle consequences.
For example, Carl has prostate cancer. He has seen several doctors and has a choice to make between, conventional surgery which often leads to incontinence and impotence, nerve sparing surgery which has a good chance of avoiding both these problems, implanted "seeds", robotic surgery and watchful waiting. The surgeon he wants to use for the nerve sparing surgery is not on his insurance plan. If he uses the seeds and gets a recurrence, he may not be eligible for robotic surgery down the line, but he will not have any down time from work. Loss of work and income makes Carl anxious about money and job security. Will watchful waiting result in so much stress and anxiety that it won't be worth it? Each choice has pros and cons, some medical, some financial, some QOL, some lifestyle.
Q: In reality there are time limits to medical appointments, often resulting in short, frustrating answers to queries. What can patients do to get more time and clearer answers, and to avoid being talked down to?
A: We have evidence that those patients who come to appointments and are well organized with written questions and prepared topics to discuss get more of the doctor's respect, time and attention. Think "patient/doctor partnership" and you will convey a sense of participation that will eliminate much being talked down to. See the answer to question #10 below.
Q: It's mentioned that 'psychological side effects trigger excess production of the hormones 'norepinephrine and cortisol' which weaken the immune system', thus allowing other diseases to move in. Yet patients often lack psychological support. What can be done?
A: Having cancer, making crucial lifesaving decisions to find treatments and cures, undergoing its treatments and managing life with cancer are, by definition, stressful experiences. One of the benefits of using a Cancer Patient Advocate to guide patients and caregivers through the process is that the ongoing guidance helps keep stress at bay. Further emotional support is available through mental health professionals and cancer support groups. Exercise, Meditation, Energy Healing and Yoga are also helpful.
Q: The book tells us that 'Oncologists and oncology nurses won't initiate conversations about a patient's treatment ... not that they don't care ... it's how they are trained'. Why are they taught in this way? What is the thinking behind it?
A: The basic premise is that if the patient wants to know they will ask. This is partly an effort to be sensitive to the patient's needs, a time and economy issue for the medical personnel and a medical personnel job definition issue.
Q: In the well-rounded support team, the primary-care physician is referred to as 'knowing the patient the best'. The current trend seems to be towards teaching hospitals, with facilities for family health care, where primary physicians (and nurses) are interns on contract for a year or two, and patients end up with a succession of different primary care doctors. Isn't this trend damaging to patients?
A: In a word "yes." What it means is that the consumer has to do a lot of shopping to find the best solution among those available. The consumer has to also be a more assertive user of medical services. Here's that patient/doctor partnership attitude again. It takes work to make it happen.
Q: What can individuals do to campaign for better insurance company contributions, communicative support, cooperation and understanding of subscriber needs (especially from underwriters and claims representatives)?
A: Contact your state and federal legislators who focus on the issues of interest to you and sponsor bills that support them. Build a working relationship with your claims representative.
Q: 'CAM' (complementary and alternative medicine) is discussed in the book. To what extent are today's medical teams open to CAM and the establishment of treatment protocols?
A: Some physicians are very receptive to CAM. Others are not. Again, be a discerning medical consumer to find the practitioner that feels best to you. Sometimes, you can supplement your regular primary care physician with consultations here and there with practitioners who are not on your insurance. You create checks and balances that way without a lot of expense. There are also integrative medicine physicians who combine conventional and complementary medicine.
Q: Dr. Porrath was an oncologist, teacher, and served as a 'patient's partner'. What is involved in such a 'medical partnership'?
A: It means "shopping" to find a physician who will work as your partner. They are there for the finding. It also means that before you can become a partner, you have to take on the attitude of a proactive partner. First of all, it means building trust in your partner. This does not mean following all instructions without question. It means struggling with your pull to do that and bringing your own ideas and suggestions to the table for discussion. As a partner, come prepared to meetings, do your homework. For research, the internet has much to offer. On pages 193-99 in When It's Cancer, we have a list of some of the better sites. If you need additional thoughts, consider a second opinion, talk to a survivor. Take notes, write out questions, bring in your results, discuss questions and information gleaned from your other consultations with your doctor. Remember, effective communication is based not on equality, but equity, with each person making their unique contribution. As in any relationship, your active input will energize both of you and give you better results.
Q: Please tell us about the formation of the Porrath Foundation, its purpose and role.
A: Saar Porrath MD, a renowned breast oncologist, and his wife Toni Bernay PhD, a prominent psychologist, founded the Porrath Foundation for Cancer Patient Advocacy. The Foundation was born during Dr. Porrath's battle with plasma cell leukemia. It was then that he and his wife realized that despite their professional expertise, knowledge and resources, living with, treating and managing cancer is a complicated and overwhelming job; and if it was hard for them, imagine others.
It became clear to them that those cancer patients who get the best treatment results and quality of life are the most informed, proactive and involved in the process. With the goal of helping all cancer patients more effectively manage their disease, its treatments and a life now complicated by cancer, Drs. Porrath and Bernay developed:The Personal Cancer Management System (PCMS) with its more than fifty tools and exercises.
It is based on Drs Porrath's years of clinical research and experience in helping patients to become a partner in their treatment, guiding them through the cancer process and opening up his resources to them. Subsequently, he and Dr. Bernay continued to refine and codify the system. The end result is using the PCMS to train and make accessible to the cancer public primary care practitioners, psychiatrists and psychologist who subspecialize in Cancer Patient Advocacy. In addition, the PCMS is the heart of their book When Its Cancer ... 10 Essential Steps to Take After the Diagnosis. The foundation also does public outreach and professional education through hospitals, clinics and community organizations; offering lectures and cancer forums featuring national experts.
What are Cancer Patient Advocates and what do they do? They fill a critical gap in cancer care. So often, when a person is diagnosed with cancer, cancer specialists take center stage and their primary care practitioner drops out of the loop. Overwhelmed with information, options and a life made more complicated by cancer, patient and caregiver feel at a loss as to how to make wise decisions and move forward. Needing more time and care than ever before, patients find that their familiar quarterback is gone. Enter the Cancer Patient Advocate to become that guide who can help patients and caregivers get where they need to go. They shepherd them through the maze, enabling them to make wise medical, complementary medicine, QOL and lifestyle decisions from diagnosis to recovery or end of life.Find out more about Dr. Toni Bernay and Cancer Patient Advocacy at the Porrath Foundation website.
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