Two Hats

I held my breath as I entered my password and clicked and scrolled my way to Lia's MRI scan. She was only 2 years old. She had spent most of her life struggling with a malignant brain tumor. She endured multiple surgeries, round upon round of intensive chemotherapy, and all too many long rides in the night to the emergency room on the icy, snow-blown backroads of upstate New York. She had finally achieved a tenuous state of remission, and she was happy. But then several months ago, the tumor came roaring back. We enrolled her on a phase I clinical trial, and now it was time to see if this new therapy had worked.

The MRI filled the screen: the tumor was bigger. In addition, a huge collection of cerebrospinal fluid had created a cyst that compressed her bruised and battered brain, posing an imminent threat to her life. My pulse quickened. I slumped in my chair as a discomforting wave of anxiety and sadness swept over me.

As a pediatric oncologist and a physician certified in Hospice and Palliative Medicine, I felt a tug in two directions. The oncologist in me (like some cartoon caricature perched on one shoulder) exclaimed, “Drain the fluid; it's a minor surgical procedure, it will give her more time and open a window of opportunity for more therapy.” But the palliative care physician in me (gently perched on the other side) whispered, “Does it make sense to put her through more? Is surgery involving the brain ever minor? And even if she got through it, are there any treatments to offer?” As I approached her room, I was not certain what they would want or what I would recommend.

My background is hardly unique. As the field of palliative care has grown, it has attracted many physicians in mid-career, many from other medical walks of life. In pediatrics, many of the leaders in palliative care are neonatologists, intensivists, and hematologists/oncologists. These physicians, like myself, hail from a culture of aggressive, disease-targeted care. A potent attraction of oncology and intensive care is the satisfaction of performing interventions and designing treatment regimens that enable critically ill patients to recover, to get their lives back. The fact that we routinely witness successes further fuels our belief in the value of these interventions and therapies.

But the physicians in these fields and many others also deal with pain and symptom management, goals of care, and end-of-life care on a daily basis. Many of us grew up in an era when there was no formal training in how to do this. Formal hospice care was in its infancy in the 1980s, and palliative medicine only emerged as a discipline in the 1990s. Indeed, a 1998 survey of pediatric hematologist/oncologists revealed that only 10% of those surveyed ever received any formal training in Hospice and Palliative Medicine. ¹ Even today, formal training in palliative care as a part of subspecialty training is far from the norm. ²

For physicians who grew up as subspecialists and only later incorporated palliative care into their practice (whether formally or not), there is tension in reaching decisions about life-prolonging care for their patients and families. The principles of aggressive, disease-targeted, curative care were imprinted upon us as trainees and remain a part of who we are. But these principles clash with a new set of principles: that there are limits to what we can do, and sometimes our patients are better served by a more palliative approach to their care. These were the principles that were swirling and clashing within my own beleaguered brain as I approached Lia and her parents.

Lia looked quite ill when I saw her. Her lethargy and lack of tone left her limply folded into the contours of her mother's lap. A weak moan escaped her lips. Her gaze was mournful, eerie, vacant. Her parents were terrified. As we discussed the gravity of her condition and the range of options, I could not get a clear sense of what they wanted to do. That was understandable, because I did not have a clear sense of what I wanted to do either. It was hard to believe that a neurosurgical procedure, even a minor one, could make her better or more comfortable. But it was just as hard to advise them to focus on her comfort and just let her go. The looming decision created almost unspeakable tension.

How can such tension be resolved? Actually, I think this sort of tension can be a good thing. Its very existence may provide stimulus for a more informed and open discussion with the family, and ultimately, a more carefully considered recommendation. It may prompt a review of the literature, or an e-mail or phone call to a trusted colleague at another center. It may be impetus for a multidisciplinary group discussion regarding the pros and cons of an aggressive intervention. Confronting the tension in this way may actually help to resolve it.

Another way to resolve this tension is to ask for help. In my pre-palliative care days, I had always bristled at the thought of formal palliative care involvement, maintaining that I can do this. I do not need the help of others. Even now, as a board-certified physician in Hospice and Palliative Medicine, part of me thinks I am abdicating my responsibility to make the hard decisions and that I am fragmenting my patients' care. But a bigger part of me realizes that the fresh perspective that comes from a palliative care team can not only help the family, but also the physician, to arrive at a decision that is in the best interests of his/her patient. Furthermore, that perspective may help us refocus, because when we are immersed long and deep in the care of very ill patients, we may develop emotional ties that on some subconscious level might cloud our thinking and interfere with our ability to provide the wisest counsel to our patients and families.

I recommended a more comfort-oriented approach, but also suggested we invite the input of the palliative care team. They fully evaluated her and talked at length with her family. They gleaned from their extensive discussions that the family wanted a consensus recommendation from the neuro-oncology team, and that they favored any intervention that might give their daughter more and better time. The neurosurgeon felt that a procedure to decompress the accumulated fluid was relatively safe, and our neuro-oncology team supported this approach. The parents were pleased with this recommendation. The following day, she had a shunt placed to drain the fluid. She tolerated the procedure well and lived another 6 months before dying peacefully at home.

The process of arriving at a decision had been a messy one. There were flips, there were flops, perhaps reflective of my own (and perhaps the parents') conflicting feelings. But in the end, a good decision was made, because the basis of that decision was open discussion with the family, the neuro-oncology team, and input from a palliative care service.

Wearing two hats is not such a bad thing. I believe most of us wear two hats, no matter our age, our medical background, or extent of training in palliative care. We all struggle to find that balance between doing whatever it takes to get our patients through a critical illness and being mindful that there are limits to what we can do—that there is a time to say, “enough.” That struggle is a healthy thing. It makes us think harder about the agonizing decisions that we, and our patients, wrestle with, and it enables us to communicate more openly and honestly with our patients and their families about the range of options available to them. Ultimately, it makes us better for the patients we serve.