Director of the Pacific Family Mediation Institute
Interviewed by Julian Portilla — 2004
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Q: Tell me about your work over the last year and-a-half?
A: Over the last year and-a-half, actually over the last two years, I've shifted more to doing advocacy work in health care. Specifically, I've been working on the creation of a small foundation, and it's just up and running and it's Ovarian Cancer Care Management, because I found myself personally having to deal with these issues. I began to meet more people that were having to deal with these issues, and realized that certainly this aspect of health care is largely being bypassed. In terms of funding for research, it stays pretty much in the shadow of breast cancer without any transfer of funds. Also, that people greeted with these diagnoses don't particularly have knowledgeable first responders. Family doctors that have misdiagnosed these are afraid that you're going to sue them, so they're not very helpful, and they try to pass you on to specialists that they may or may not know. There's the whole issue of testing people who are not supposed to give you information; often they do or they don't. One way or another, it just becomes very hard and very frightening for people to get accurate information or to know who to see, where to go, what to do next. I became interested as I started seeking this out and realized that, one, I had to give myself a crash course, and then find groups that might help me cope with this. I realized that most people were trying to cope individually, get on the Web, create networks, and so on. In talking with another one of the women who as been very proactive and actually employed by Fred Hutch Cancer Research Consortium to do patient advocacy work, they have what are called spores from NIH which are research arms in different areas for the cancer research community. There was one in Seattle for ovarian cancer and this woman was heading that up as coordinator, had established many connections, but none of them included, "How do you manage your own care?" "How do you talk to insurers?" "How do you talk to doctors?" "How do you get new treatments?" "How do you get the clinical trial information?" So that's what we've started working on, and since we started in dialogue, decided that that would be our format. We put together our first dialogues and presented basically as simulations, not dissimilar to the kind of work we were doing in training family mediators, only this time we were training people to care for themselves, or training advocates for them to help them care for themselves.
Q: Interesting. When you say dialogue, what do you mean when you say dialogue? What structure does that have? What are they talking about? Who are the parties?
A: So the parties to the dialogues, for example, would be a patient getting, at least at an outset, a new diagnosis and some idea of role play, what the doctor might be thinking in terms of what they tell this person, how this person might be responding, so you get some sense of a face to this. What does a face to diagnosis look like? What is a doctor thinking? What is the patient thinking? What kind of information would be helpful? For example the role for the doctor would include the next step. Instead of, "Go make your will," it would be, "There are some people I'd like you to see; there are some tests I'd like you to have; let me help you get that set up." It might include for the patient, "What do I do about insurance?" "Who's going to pay for this?" and so on.
Q: Is this to prepare, like a mock dialogue? Or is this actually ??? .
A: Well, it's based on the real dialogues, but what you're creating for training purposes, for patient advocacy groups and for doctor groups, are simulations. They're as close to real as you can get. They're based on what kinds of conversations people have had, what's terrified them, and how do you correct that? How do you get people in a situation where people can manage their care and talk to the people that can help them manage their care? So the first one was on diagnosis, which we presented and got feedback on them as to how to make them better. The next one that I'm working on now has to do with access to insurance companies, and how you create a dialogue that will be patient-sensitive. There is that dialogue. The other planned dialogues include, "How do you access Web information on clinical trials?" (pretty much, what's the simplest way to do this and how do you then present your information to doctors)? So that dialogue is all about a patient coming in now with the information, being able to give it to a physician, asking for review times and feedback, which is a totally new occupation for both patient and for these doctors. What I have found through the course of my own experience, and what a lot of the other women have found, is that the more research-oriented physicians will not want their patients in any experimental clinical trials until it's proven, but in these situations, you don't have ten years to prove it because all these people will be dead. It's really a matter of informing doctors in a way that's non-threatening and have doctors able to provide information that's sensible in terms of where different patients are. Same with insurance: It will not cover anything that's not the standard of treatment in a given area; on the other hand, to wait for an improved standard of treatment means that the person will die. You're trying to put a face on translational research, basically. To get it from a Petri dish to the patient and make sure you check out what's going to be fatal. Since I started doing this, which is a crash course in this, I've learned a lot about what does or doesn't happen because of the number of variables that aren't considered. What is the place of gynecological cancers and how do they sort out what gets attention? Does it sort out by gender? Does prostate cancer get more attention or funding for men than gynecological cancers do for women? Among gynecological cancers, if ovarian is the scariest one, does that mean no researchers want to do the research on that one? There are some very interesting questions raised, and some of these need to come into the patient advocacy area. First of all, to empower people to do patient advocacy work and then to understand that a part of that is not only for generations to come, you have to have some element for yourself to engage in this. The institutes that are research-oriented want to enlist you as part of this project, to promote clinical trials to bring in people with or without disease to participate.
Q: In experimental treatments?
A: In experimental treatments. On the other hand, the people doing it need not to be a victimized group. They need to be a group that's cared for and supported in the larger effort that basically is the research-to-patient-care avenues.
Q: That's fascinating use of the word and the practice of dialogue. The people who would be participating in these trainings and these dialogues are diverse; patients, doctors, insurance...?
A: They're very diverse. The way the institute that I've been active with has been set up is that it has Science Fridays. Researchers come and they talk about what they've been doing, or doctors come and they talk about how they're operating within this arena, what needs to be done and so on. Various people that have been involved in one way or another with this illness will come. Either they have family members, or friends, or they are the patients themselves, and it's a knowledge base. What you're trying to help people to do is get a knowledgeable grip on what's going on and try and move that to a care-advocacy format. The use of dialogue in this way -- I think the whole area of simulations in the health care field -- is newer there than it is in many other areas. First of all, advocacy is very difficult when you're in a state of shock, and so is gathering information. A lot of what this is about is to give people people to associate with who have both knowledge and a care basis to what they're doing, so individuals are not totally alone trying to find their way and Google around the Web to get care. Also, to help them understand where stakeholders are, why doctors are saying what they're saying, why insurers are saying what they're saying and so on, so you can participate meaningfully in the discussion. This is a use of dialogue both to inform and to empower.
Q: It's a mock dialogue, but not really because there is real information being traded in that mock dialogue. The only thing that's "mock" about it is that you may or may not be in that particular situation at that time.
A: It's a learning tool.
Q: Is there resistance on the part of the establishment of the medical profession to dealing with this, or have you framed it in such a way that people are interested?
A: So far it's not a huge project, and as we've talked and gotten people involved in the foundation, it's more a time factor in some ways than it is a resistance. Obviously there are some doctors that are resistant. They say, "Well, you don't know how much time you have, so why don't you just go out and enjoy your life and let somebody else do this?" You may get some of that. On the other hand, you'll get people who are delighted to have the involvement, I've heard from some doctors that are just a little perplexed by it because they don't know how to distinguish the people who want the dialogue, who want to know options and parameters and who they need to talk to, from the people who want them to just take care of them. That I have heard. It's just you're always telling people either too little or too much, and, "Can't you just give me a prescription and then I can follow it A-E with every patient?" Of course that isn't possible. What we're trying to have the care providers do is really have the time and the vision to know each person well enough to ascertain what needs to happen next so they can be able to manage their lives. There's that kind of psychological piece around, "How do you do this?" In respect to the conflict resolution field, this whole area is fraught with conflict. It's just an undercurrent of conflict from the get-go and a lot of it is potential. It's between patients and insurers, patients and doctors, doctors and insurers. Unless it's something that's already happened, usually mediators and facilitators are not involved. What I would like to see happen is this get into the preventive arena.
Q: I was just thinking preventive. How fitting that we're talking about the medical profession and preventive medicine is sort of the new wave of medicine, saving millions of dollars by preventing things before they happen. It's a perfect metaphor for what you're doing right now.
A: It's also about alternatives, because if you can bring this into a knowledge base, you're able then to reduce some of the fear components. You're able to put a face on it in a way that will invite people to do the research, to think about the funding, to think about the funding in terms of human lives as well as their pocketbooks. What I have found a lot of in this particular area is, there would be more research if there were more numbers, but unless your numbers increase exponentially -- in other words, unless you are involved in an epidemic -- there isn't any money. This is very interesting thinking, because presumably our western thinking takes in the individual, but in fact, in this area of health care, it doesn't. If only 40,000 people are dying of this and not 100,000, it is not a problem of enough magnitude to stage a full-scale effort to improve the situation. A lot of this has to do with recognition. A lot of this has to do with how people in our field want to bring their skills to this. Do we want to just stay in the third party area of, "We're available as mediators and facilitators," or do we want to be proactive and work with advocates -- in other words, get the dialogues going with participants, with parties, before they're involved in a blowout conflict?
Q: I really think this idea sort of breaks the bonds of possibilities of interventions for third parties, or at least using the tools we're using in conflict.
A: I'm thinking in terms of Beyond Intractability; it's another little avenue.
Q: Well, how about before intractability?
A: Well, I think some of that intractability is there, some of the parameters set by what insurers want to pay for, where some of these boundaries are, some of them are quite traditional. I think we're looking at a situation that's very positional. Can we do things before it becomes so? There are now some projects in this area where we are going in with our stories, to tell medical students so they will be better diagnosticians. That particular one is not my project; it's Betty Risor's project out of New York. We are now training groups all over the country to go in with these stories that emphasize diagnosis and what's happened as a result of misdiagnosis, to train medical students to listen, to understand symptoms, and to put a human face on it. So that's a wonderful question, because prevention here means education, education, education, starting at the very outset. It also means making young people aware of the signs and symptoms of illness in this area. It's called a silent killer; people ignore a lot of the symptoms, but there are symptoms. People are developing them at younger and younger ages. For some of us, there is a higher hereditary component to this, but since a lot of folks don't have hereditary information, and more and more we're a mix of societies, so you don't know what you've inherited and from where...As more and more research is being done in the whole cancer arena, it's turning out that certain types of illnesses are related, so certain types of treatments coming down the pike are helpful to a whole range of things that people didn't realize originally were on a line with things that might be treated. Right now, research is in a very funny place; they are still doing clinical trials based on individual sites of cancer, where once treatment is approved there isn't the realization that, "Oh, what you can treat prostate with can be used to treat ovarian," but the funding will only be for the one where they've had the trial, not with the one down the line. So certain research evidence is appearing where the funding resources haven't caught up. Well who gets caught is the patients that are down the line from where that original study is done. A lot of the treatments for ovarian are "piggy-backing" on the treatments for breast cancer. Well, will they work? Maybe not; maybe some will. There needs to be more awareness and more flexibility within the system, if it is to be a patient-oriented system. A lot of what I see doing with the foundation is educational. The website is to hold the dialogues; I don't want there to be a charge for the dialogues. I want people to be able to link on and say, "Hey I'm in this situation, who do I talk to? What do I say?"
Q: It's an electronic dialogue, or maybe there's both. There's an actual physical space where you can meet or there's also this electronic site?
A: Well, you can present these, but I also want these dialogues up on the website. So the website is designed to have windows and the dialogues are there. You can animate them or however.
Q: I was envisioning ten people in a room having a little simulation, maybe a little audience, a fishbowl exercise.
A: And that's exactly the way we started it, but the next step is the moving of the dialogue to the website. Where you tap on it and the dialogue is going on.
Q: You eliminate scheduling problems and resource problems in terms of space, etc.
A: So you have learning in a virtual space and you can go on it at any time. So that's really what I'm working on. It's kind of an idea in formation, it's a change from what I was doing before, as I say I am still doing some of that and it's been helpful in a sort of way. I see now and I do ADA cases or others, and where are you coming from as a person with needs in these situations?