Whether we are genuinely interested in the person we are speaking with -- or not.
Whether we are willing to do more than just get through another challenging exchange.
Whether we are willing to let someone else be an equal in a dialogue, or by virtue of our role or authority or temperament we must still be the one in charge.
In any number of ways, how we share ourselves through language is so essential to relationship that it becomes invisible, the taken-for-granted ocean we are swimming in without knowledge of what might be just outside the realm of our sensitivities.
Tony Back, this month's Leadership Conversation, puts just enough dye in the water for us to recognize how much has been taken for granted in health care environments, where power relationships between physicians and patients are assumed. His work points to a different way of being, a different way of talking about serious illness that goes far beyond statistics and technology. But he is also talking about the whole phenomenon of what we let become "undiscussable," which generalizes to all of us and every industry.
Do you really want to know what concerns another has, or are you focused on what most concerns you?
Are you making too many statements without asking enough questions -- or using your questions to make statements? Or are your inquiries of another truly open-ended?
Do you know what you sound like to others? And can you hear the wholeness of another person through the inner ear of your own feelings and intuition?
Leadership Conversation
Tony Back Helps Us Embrace Mortality As Part of a Great Life
Tony Back Is an skilled oncologist and long-time professor of medicine, but he is much more. He is one of the founders of VitalTalk, a nonprofit 501c3 organization devoted to nurturing more open, healthier connections between patients and clinicians. He and his partners develop and facilitate advanced communications skills courses and other trainings for physicians and other health care workers that are devoted to balancing honesty and empathy when discussing serious illness and end of life support. Tony brings to this work extraordinary personal insight into the challenges of treating cancer without losing sight of the whole patient. Recently, Tony shared his vision with me why this work is so important to him and the health care system as a whole. Leadership, in his view, is about surfacing issues that are often undiscussable.
Tony, first, how did you become interested in communication patterns within the health care system?
Twenty-five years ago I had a very personal experience with how uncomfortable we are with discussing cancer. I was a student at Stanford at the time and my parents lived in Philadelphia. I learned my mother was very sick and when I talked with her doctor, he described in technical detail problems with her spleen and other symptoms, but he did not say that this could be it for her, that she might die imminently. But I got a sense of the seriousness and so I cancelled my finals and bought a ticket home. Before I could arrive, however, I received a call from my father. I heard something in his voice but he couldn't say it out loud to me. I had to guess what he couldn't tell me, which was that she had already died. Neither the doctor nor my father knew how to talk about it at all.
Fast forward to some years later when almost the same thing happened when my father died, and I noticed again how the doctor did not know how to talk to me about my father's condition prior to his death. It's entirely possible, had his doctor been more open, that in fact he might have received better care.
Fast forward again after my parents' death to my own training as a doctor at a well-known medical school. I remember as a medical student hearing how a faculty physician discussed the death of a woman with preleukemia about the same age as my mother. His only comment, as we turned the corner, was that "she was kind of an old trout." That was it. The emotional truth of what had just occurred wasn't part of the dicussion.
All of these events in one way or another were symptoms of the deeper problem that we don't know yet how to talk sensitively about disease and death.
How is it, do you think, that we've arrived at this place in medical care where we have technological sophistication, but not necessarily human sophistication?
We think of cancer as a killer, as a disease that robs us of life, that takes away family members and friends, the people we love, and maybe ourselves one day, too. And cancer is indeed painful, unpredictable, something we wish simply did not exist and don't naturally like to think or talk about. As a disease, after all, it is something medical science and technology are supposed to conquer, and I would emphasize that word, "conquer," as the expectation our society places on how to handle its problems.
But alongside these views, I suggest another way of thinking about cancer that is not, generally speaking, part of our culture at all. Cancer is also a teacher as to how we live with our mortality - both as individuals and as a society. The fact of death, if you study it, creates a new kind of value to life. When we stop pretending that death isn't part of our lives, we see with different eyes. We begin to acknowledge that what happens today is really important. Our orientation changes from trying to hold onto permanence to living with the fragility of our lives. That's a different way of being with each other.
When people are ill with cancer, it isn't just a technological or scientific problem regarding what medicines to hand out, what treatments and procedures to employ. It is also about the quality of communication and more than that, the quality of the relationship between the doctor, the patient, and those nearby, the family and friends. It is about the whole process of adapting to an illness and to facing life and death in a new way. This is the psychological and social dimension of cancer. In simpler terms, this is the side of cancer that is really a rite of passage, both for those who survive and those who do not and for everyone around the person who has been diagnosed. Too often, unfortunately, this is a passage that is undiscussable, one dismissed in favor of a pretense, that our diseases can all be handled with better science, better technology, better drugs, better cures. When that doesn't happen, we feel cheated, bereft of the implied promise that everyone gets well. Of course, we don't want to ever give up on the research and technological advances. They are real and they offer hope, but my point is that for illnesses such as cancer, the denial of the psychological and social dimensions is part of a different kind of disease called the denial of death.
How does this denial of death syndrome actually play out in the communications of physicians?
One aspect of how surfaces comes from research showing that 80% of doctors over-estimate their patients' understanding of their prognosis. The doctors believe they have communicated; the patients not so much. What they hear are numbers, expressed with a certain objectivity and emotional distance - "you have a 30% chance of living another year," for example - and that's when the mind numbs out and feelings take over so that for that patient not much else is actually heard after that.
Another study shows that in perhaps only 11% of doctor visits patients experience a truly empathic comment from a doctor. That means that in the course of treatment requiring ten visits there might be just one comment that shows attention to how the patient doing emotionally beyond the physical experience of their cancer.
This isn't just frustrating for our patients. It degrades them. It takes away hope. It underestimates them. It steals their emotional lives, just at the very point that an illness may also be in the process of stealing it away physically.
How do we go forward here?
I want to be clear that I am not blaming doctors - I am pointing out a problem in our concept of a disease and its treatment. We all want to believe in science. We all want to believe in technology. For some illnesses, such as heart disease, we've made a great deal of progress through technology and this confirms a faith in our capacity to understand, to know, and to treat with certainty. Unfortunately, this also feeds our society's assumption that technology will save us. We like that belief. A lot. We like that sense that there is a technical solution, that we won't ever had to adapt, to go through that rite of passage, that, in essence, we won't have to feel - we'll just pay for a fix and then return to everything we had the day before the diagnosis happened.
So what must we do to come out of the fog? And particularly, how as doctors do we embrace a deeper sense of what care means, what it means to help people adapt, not just go through a series of technically defined treatments that may or may not work?
Fifteen years ago with some talented colleagues, I started an enterprise, now called VitalTalk, to help physicians learn how to have difficult and more personal conversations with their patients. Essentially, in addition to our other duties and care for our patients, we travel globally to train physicians and nurses. We have courses and specific training methods and materials, some of which are available on our website. The goal is to build competence on the relational side of medicine.
What would you say are some key lessons you've learned from this work over the years?
One is that attending to the emotional needs of patients can be wrapped into every conversation about the disease. Being able to reflect back to patients what is being heard from them about their feelings is essential. If a patient is angry about his or her treatment you as a physician need to hear that and be able to talk about it. If the patient is confused, if the patient is disappointed, if he or she is already grieving, and if the patient is happy or relieved, right here, right now...that is all part of the data that is needed to assist and facilitate a person's rite of passage.
A second lesson is that doctors need to be more transparent, more open and honest and willing to do the hard work to create real understanding, rather than glossing what is going on. Many patients these days arrive for care having read all kinds of things on the internet about their form of cancer, about chemo, about alternative or non-traditional or untested new treatments. They are not looking for pat answers or ABC's. They are grappling with the specifics, wrestling with the presence and absence of information, and they expect their physicians to wrestle right along with them.
A third lesson is that patients expect to be treated as individuals who have their own subjective approaches to their rite of passage. They are not objects passing through a long-chain of waiting rooms and treatments like so many cars going through a car wash. One of my patients is an artist who defines her wellness in terms of her life as a painter. On a video she made for the National Cancer Institute, she says that any day she is able to paint is a day she doesn't feel sick. I've learned to ask her has been been doing her painting, her real work--because this is the best metric for her of how she is doing.
A fourth lesson is that we need to help people adapt to their losses incrementally. What is apparently smaller prepares people for what is larger. A colleague of mine, a wonderful physician, told me about a conversation she had where a patient talked about missing the fact that he could no longer have sex in the bathtub You could laugh about that, and some doctors would see that as kind of trivial. He could still have sex, after all, just not in the bathtub, so what is there to talk about? But actually this situation is an opportunity to work with the patient, to help with that exact process of adapting on a smaller scale so that if larger scale adaptations are required later the patient has a track record, and he already has some emotional structures for moving forward.
What would you say are some of the barriers to the type of training work with physicians and nurses that you do?
You could say these barriers are physicians who are out of touch; or health-care systems that increasingly are oriented toward depersonalized profit motives; or medical schools that take a narrow view of what medicine is. But here's another side of those barriers: doctors are burning out at unprecedented rates. At the very time their humanity is most needed to facilitate the rite of passage of their patients, their own bandwidth is decreasing. 40% of physicians currently say they are in some stage of burnout. This may be because of workloads, hours, the lack of community they experience within their institutions. It may be the result of how disenfranchised and commoditized they themselves feel by the "industry" of healthcare, and it may be the result of the old school culture of doctors over the years that has sometimes over-emphasized self interest, emotional deadening and two other prominent enemies of a more holistic or humanistic approach: silence and contempt.
By silence what I mean is the tendency of us doctors not to speak up about our own emotional realities and needs. I have a colleague, for example, who is ill with his own cancer but who is trying to work as if he is invulnerable to its effects. As a psychological compensation we can understand and empathize, but this is also an ironic symbol of the denial and insensitivity that doctors often express toward themselves. By silence, I also mean the doctors who fail to support themselves as a community of people, who have no stronger sense of affiliation, trust and vulnerability with one another than that afforded through treatment discussions about their patients. And finally, by silence I mean the absence of speaking up in organizational life, isolation from one another while "being smart" about the power strategies being played out in their organizations.
But worse than these forms of silence is contempt: contempt for anything that smacks of weakness or emotion or subjectivity. It is so much easier to blame the system, blame staff, blame the patients, criticize anything that might be "touchy-feely" in nature, that might have a subjective, feeling oriented side, than to deal with the fact of a certain loss of soul in ourselves that has already taken place, pretending along the way that this loss of soul makes us more objective, more independent in our thinking. The truth is, as physicians we don't treat each other or ourselves very well. We pride ourselves on making our points, but we're a lot less concerned about whether our patients feel they can make their points. Contempt has a function in our profession and that function is to be emotionally distance from who we are and what we may have become. It helps keep us emotionally distant from what we do - or in the case of cancer - what we do not do - which is pay attention the emotional realities of our patients and ourselves.
If - and it's a big if - we can see cancer as a teacher of the kind of health care system we could and should have and of the kind of people we could and should be, then I believe things can change and we move past the barriers.
What can any of us do to encourage better connections within our systems of care?
I'd say, if you are doctor, open up. Talk to others; break the silence; bring up the concerns that are bothering you and begin to see in your patients exactly the same challenge. What aren't they talking to you about? Why not? How can you make it safer, easier, to begin an exchange that is between two human beings, two people, not a role-bound physician and accommodating patient. Become at least 10% braver than you are today and become 10% safer to talk to.
Also, notice how denial and awkwardness around tough topics have affected you sometime in your own life history. The start for me were the deeper conversations I didn't have with my father or with my mother's doctor.
If you are a patient, invite your doctor and other care-givers into the conversations you need. You, too, may need to speak up, to by-pass your own dislike for a system that may not be serving you. But just being demanding isn't the answer either. Be the change you want to see in the world. "Invite" is the operative world. Invite people to speak with you and help you get the information and understanding you are looking for.
If you are a leader in any part of a health care system, notice the kinds of changes you are attempting to guide and how you are doing that. Will your approaches induce more silence or contempt or will they open the door to a real dialogue? What is "undiscussable" in your organization generally? Why is that? What will it take to have an open conversation, really? What will it take to bridge the communication fault-lines that are common to organizations?
In all of this, as a physician, as a patient, as an administrator, the key, as it so often is, involves our own leadership. The term "leadership" is often overused, but in this case I think it has a very specific meaning. A leader is someone who is in touch with his or her own larger rite of passage as a person. A leader is someone who deeply values the fragility of life and lets that value compel personal action toward a higher good. A leader is someone who sees problems as teachers, in this case, illness itself as a key to what it means to lead a great life - for as much time on earth as he or she has got. 
