Open letters

More from Betsy de Parry.

Betsy has a column that appears in the online version of the Ann Arbor newspaper. She's replaying her experiences as a cancer patient, which she originally published in her book The Rollercoaster Chronicles.

Last week, she wrote "An Open Letter to Oncologists Everywhere." It sums up what most cancer patients think and feel about their oncologists -- that we want to trust them, but we need some assurances. For many of us -- maybe most, maybe all -- this is the single person we're trusting with our lives. For some, that trust is more desperate. For others (like me) that trust is still important, but we have the luxury of a little more time to build that trust.

Here's Betsy's letter (the original appears here):


Dear Doctor,
Here we are, you and me, our lives connected by cancer. My cancer. Under the circumstances, I’m really glad to have you in my life, and I want our relationship to be very, very long and very, very good, but since I can’t find a manual on how to build our relationship, I’m guessing that, like any good one, it has to start with trust.
But trust takes time, which we don’t have, so I have some things to ask and say.
First, just what am I trusting in you? That you’re brilliant, cool under pressure, experienced, knowledgable and up-to-date on the latest miracles of modern science for my type of cancer? That you won’t be too proud to call in colleagues or send me to them if you get stumped or run out of ideas? That you’ll always be honest with me no matter how hard it is for you or me? That you’ll help me set realistic expectations without ever stealing my hope? That you’ll be my strength if I’m too weak to be strong? That you won’t give up on me if the going gets rough and it looks like I won’t be one of your success stories?
Do you understand that it’s hard enough to put my trust in you, but even harder to put blind faith in the people I can’t see but on whom you rely? Like the pathologists who look at tiny pieces of me or the radiologists who interpret pictures of my innards. You may know their credentials, but I don't.
I get that you went to medical school to learn how to identify and treat disease, not to listen to me blather on about how cancer is more than a physical problem. That it’s really personal. That it sweeps us patients and our families into a tempest of confusion, fear, frustration, vulnerability and isolation from the healthy world. I’ll try very hard to check those emotions at the door when you and I visit, but if they creep into the examining room, is it too much to ask you to recognize that I’m not just a collection of cells that needs to be fixed while you work to fix my wayward cells?And Doc, surely you know that your sophisticated equipment can’t see the parts of me that make me who I am. And I am not my cancer. No machine can identify the parts that make me love and laugh. And none can calculate how very afraid I am. Of what lies ahead. Of dying. Of pain. Of medical procedures. And of becoming a number in a bureaucracy where no one will care whether I end up running a marathon or being turned over in a bed like a piece of meat on a rotisserie. Could you occasionally share my fear and shore up my hope?
Doc, I’ve tried to put myself in your shoes, but I can’t imagine how, day in and day out, you see humanity at its weakest and still find the strength to help us. I’m just glad that you can. And I know I need much more from you than you need from me, but I’ll do anything to help you help me, if only you can squeeze out a little time to teach me how to be a good cancer patient in addition to everything else that I ask of you.
Neither you nor I can predict the future, Doc, and I don’t expect you to do more than is humanly possible. But may I trust you to treat my future as if it were your very own?
Respectfully,Your Patient

A few days later, Betsy got a response. Here's Betsy's introduction, followed by the letter from a local oncologist/cancer researcher (again, the original appears here):


Dear Readers: In response to my letter to cancer doctors last Tuesday, Dr. Gary Hammer, world-renowned adrenal cancer specialist at the University of Michigan Comprehensive Cancer Center, wrote this very beautiful and moving letter to cancer patients everywhere. Dr. Hammer expresses what those of us who are lucky enough to have doctors like him know: that by sharing our illnesses — no doubt surrendering their own comfort to do so — the physician's healing power transcends the science of medicine to help us heal in ways that no medicine ever could. I am deeply grateful to Dr. Hammer for giving us this rare view of the doctor/patient relationship and honored to share it with you.
Betsy

Dear Patient,
You have asked questions about the unique aspects of the doctor-patient relationship. I will attempt to answer them as well as share my perspective on illness.
Life is indeed defined by relationships — feeling understood and feeling connected in our relations is trust.
You ask what you are trusting in me. Trust is earned. It is fair for all of us seeking care to expect competence, it is fair to seek excellence, it is fair to want the best. It is right to demand respect. It is right to demand honesty.
You ask that I not be too proud to call in colleagues if I run out of ideas. The Hippocratic Oath, a verbal decree by doctors to honor and respect human life, speaks to integrity. "Do No Harm." My interpretation of this most powerful phrase is that we must not be wrapped in solitary ego and hence filled with the imposter syndrome, afraid of being found out that we are fallible, imperfect and not all-knowing, afraid of what we don't know. A good doctor knows what he or she doesn't know, is not afraid of that fact and discloses it humbly. Owning our limitations is freeing and honors our shared humanity. Consulting with colleagues and other specialists who know more than me about a particular situation is absolutely essential and happens every day.
You ask if I will be honest with you without stealing your hope. Honesty and hope, at times, seem to be mutually exclusive reflections of imminent death versus certain cure. Rather, they are our forever present and forever fluid experience of our life with illness. I will honor both.
You ask if I'll give up on you if the going gets rough. A person doesn't "give up" on another person. While I might give up on a given therapeutic approach, I will never give up on you as a person. I will fight alongside you. I will surrender alongside you, but you — and only you — can decide if, when and how to engage your life, your experience of illness and ultimately your death.
You wonder how to trust members of my team whom you will never meet. The only way that you can feel confident in this dance is to trust me and our team. And it is a team. I promise to hold your best interest in the fore and to represent you to the team. Know that while I cannot formally speak for others, I will demand the very best from those I consult, from those on our team, from those we together entrust with your care.
You ask if I will treat you as more than a collection of cells that needs to be fixed. I reject the concept that doctors must disengage to provide "objective care." What does it mean to be objective anyway — cold, impersonal A+B=C? What good is that? On the contrary, conscious and emotional engagement not only facilitates healing and/or acceptance in the ill, it opens a space in the caregiver as well. In that vulnerable space where spirit mingles, life is transformed for the suffering, and life is transformed for those who bear witness.
You ask me to share your fear and you wonder how I do what I do every day. Perhaps the most frightening words a person might hear in his or her lifetime are "You have cancer." This truth revealed fractures our reality. It challenges our relationship to our inner world, forcing us to re-evaluate who we are.
However, embedded within this experience lived is a gift. The little-known secret is that the gift is not just for the afflicted but also for their entire circle of relationships, including spouse, children, friend and caregiver alike. The only requirements to receive this unique communion: vulnerability and presence.
As a physician engaged in the care of people with a particular rare cancer - where those under my care almost always die — I am thankful for the sharing of truths that have been unveiled to me by these men and women in this, their most vulnerable and internal sanctuary.
In this place of finding themselves dying, brave people have let me into their space where three truths seem to be unveiled again and again as defining gifts of sacredness. These truths can be embraced as three reflections of the word "presence:" conscious engagement, the experience of present time (the razor-sharp now) and the gift of emotional authenticity.Through these patients, I have come to an understanding that if we are fortunate to actually have time while we are ill, and we are brave enough, what happens as our vanity, our beauty and ultimately our physical identity is stripped away is that we are granted a chance to become our own sacredness — as it becomes all that is left.
Sadly, when people die suddenly, they rarely have the luxury of such time, such a place. But equally as tragic is that most folks never risk to venture to this vulnerable place while living when they do have time. Having our own death close by in life — be it through illness or conscious reflection — sharpens our internal lens by stripping away all that is not present, all that is not presence.
I thank these lovely people for helping me begin to see. It is indeed my experience with deeply reflective and engaged people suffering with cancer that is becoming, for me, a touchstone for such conscious intent.
While the unique bond between a doctor and a patient has often been described as a polarized relationship of doctor gives and patient takes, doctor talks and patient listens or patient questions and doctor answers — this is just silly. Trusting comes when both feel the presence of the other — and hence know the truth of the other.
Finally, you ask if I will treat your future as if it were my very own. Such is the truth of shared experience. I hear you and I see you.
My very best regards to you in this difficult time,
Your Doctor

Gary Hammer, MD, PhD, is director of the Endocrine Oncology Program, within which are the Multidisciplinary Thyroid and Adrenal Cancer Clinics, at the University of Michigan Comprehensive Cancer Center. Hammer holds the Millie Schembechler Professorship in Adrenal Cancer. He is also the director of the University's Center for Organogenesis.

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Dr. Hammer does a nice job, doesn't he? I feel lucky to have a doctor in whom I trust, who seems to care about me as a person (we always spend the first 5-10 minutes of the appointment chatting about kids, baseball, living in Boston, whatever), and who has actually used the words "do no harm" in describing his approach to treating me.

Lucky indeed. Thanks Betsy and Dr. Hammer for an exchange that sums things up so well.