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Foreword

Centre for Medical Humanities, Royal Free and University College Medical School, London, England

You corrupt very easily, he thought. But was it corruption or was it merely that you lost the naïvete that you started with? Would it not be the same in anything? Who else kept that first chastity of mind about their work that young doctors, young priests, and young soldiers usually started with?

—Ernest Hemingway, For Whom the Bell Tolls

The act of being there with the patient and the exercise of empathic listening will require that the caregiver experience or "live" some of the hurt personally. This is the sort of altruism which fosters our own growth as human beings and in turn helps patients maintain their own integrity; heroism in the face of horror.

—An anonymous contributor to the Schwartz Center Rounds

The metaphors of medicine are rich with the language of war. We do battle with disease, seek ever more powerful weapons for our armory. Unwilling to concede defeat, we undertake heroic surgery. When even that isn't enough, we hope that magic bullets will destroy the silent enemy that eats away at our defenses. But, if Hemingway is right, those who wage that war risk being brutalized, corrupted. Robert Jordan, a young American volunteer fighting in the Spanish civil war, struggles to accept the changes that the cruelty of war have wrought on him and others. Are they simply brutalized or have they instead moved from an immature understanding of what life is to a more mature one? Is the sacrifice of innocence by the doctor, the priest, the soldier, an altruistic act to enable others to face their own devils intact, or does sharing the horror of those they fight for leave them tarnished and spoiled? This is a struggle that will be familiar to many health care professionals.

Caring for patients can make us grow as human beings, but as with Hemingway's soldier, it can also have negative impacts upon us. While caring for the sick and dying is undoubtedly a privilege, it can also be painful, frustrating, and leave us angry and confused. Perhaps that is when we grow the most. If anger is natural in dying, if raging can be rational, then maybe we need to rethink our notions of what is acceptable for patients and carers to feel, say, and hear. There is anger in these transcripts but it is rarely in a written word or expressed thought. Particularly poignant is the discussion of a patient who committed suicide, an act which all too often leaves the survivors with overwhelming anger. For caregivers this is a painful emotion to feel toward their dead patient and one that inevitably fuels the guilt of surviving. One participant in the Schwartz Center Rounds talks of death as a minor problem, with the major problem being to live until one dies. Perhaps the fact that someone has chosen the "minor problem" of death rather than face the "major problem" of life, represents an unbearable loss of integrity to caregivers, sharing as they are in a loss more personal than they might wish.

Caring for someone with cancer is personal. Every time. This volume is a welcome testament to the increasing willingness of professional caregivers to acknowledge the emotional toll of being there for the patient. The oncology team at Massachusetts General Hospital (MGH), inspired by someone they cared for who died, has chosen to do something about it. They have started by creating a safe environment in which sensitivity and respect are shown by all and to all. By sharing experiences with each other, they make themselves vulnerable. Through a mutually supportive process of critical reflection, they are helping to foster their own integrity both as individuals and as part of a team.

Many important issues are discussed throughout the Rounds and much wisdom is shared. But reading the transcripts, I was also struck by the unspoken words, by what is left unsaid. Of course, there are no stage directions, no instructions to indicate silence. The silences are there all the same, waiting to be filled with each reader's own vivid memories and unanswered questions. Equally eloquent throughout the text is the voice of the patient. It is loudest when histories turn to stories, cases to patients, and patients to people. It is the voice that urges the participants on, helping them to help each other find ways to keep their innocence intact.

In some ways of course, perhaps inevitably, carers are far from innocent. They know too much—about disease, prognosis, the realities of heroic treatments, the cost of a chance of a few days more. A recurrent theme, raised in Round after Round, is the distress felt by carers when patients choose aggressive treatments to fill their dying days. There is palpable anxiety that the wonders of modern medicine are in danger, in the words of one participant, of "cheating" patients of their own deaths. The reader is reminded of the danger of autonomy becoming illusory when the truth is so hard to share and medicine equates death with defeat.

A couple of years ago a physician wrote to the Journal of the American Medical Association describing a haunting memory of a dying child. Overwhelmed with emotion and not wishing to burden the parents, the doctor found herself sobbing alone in a stairwell. This article provoked a flurry of correspondence where some railed against a culture where carers still cry alone in stairwells. The trouble for these physicians was not in understanding the pain of their patients. It was rather in knowing how to bear it.

Those caring for oncology patients are very good at "getting inside their patients' heads." They identify with them, with their families, far more often than they would like. They understand well enough the "moment of terror and pain" felt by patients. They are familiar with the "insidious...unrelenting trauma, the vicarious loss that (they) all carry." They also carry a great well of emotion, pain, and anger waiting for an outlet. The question is whether anyone will know what to do with it if we let it out.

The oncology team at MGH is clearly aware of both the potential benefits and the inherent risks in addressing such important issues in this powerful way. They have employed a variety of creative approaches led by skilled facilitators to reflect on their work. Traditional case presentations, role play, personal narratives, and panel discussions all play a part. This is a group courageously navigating a largely uncharted terrain and sharing with us the details of what they discover on the way. By doing so they will doubtless inspire others to set out on their own journeys, an outcome of which Kenneth Schwartz would, I suspect, have been very proud.

Modern medicine is good at identifying problems, at finding solutions, at making things better. But sometimes the solution is to acknowledge and validate our own feelings and the feelings of those around us, to accept things as they are, to realize it's all right to not know the answer and that not everything needs fixing. Human beings need to be touched by the suffering of others, to be reminded of their own mortality, and to appreciate their own limitations. It is in these very human frailties that they, and others, must find their greatest strength.

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