Abstract
A
Palliative care had been around for decades, borne out of the hospice movement that Dame Cicely Sanders, a British physician, ushered in 1948 to care for terminally ill patients in religious institutions. But by the time Wendy, a registered nurse, and I, a physician, embedded ourselves in the cancer at our traditional institution, palliative care was being reimagined. A fresh coat of bright paint was being applied to an old specialty that had previously been associated with more somber tones. But our cancer center was not wholly ready for us when we burst on the scene.
After shifting to palliative care from internal medicine in 2013, I spent a year seeing the sickest of the sick patients in the hospital. By the time cancer patients received our services, their lives were almost over. Pale and gaunt, attached to intravenous substances, or swollen and breathless, they peered out through desperate eyes. More often than not our patients were grateful to hear the truth, to be given the opportunity to discuss what really mattered to them: how to assuage their suffering and make peace with death.
Just a few years earlier, Jennifer Temel's article “Early Palliative Care for Patients with Metastatic Non-Small-Cell Lung Cancer” in the New England Journal of Medicine rocked the palliative care world. She was the superstar of my new specialty and I hummed along with her presentations, when I attended CAPC meetings to help lead our own newfangled program, like I did as a teenager in the audience of my favorite bands. I stopped short of igniting my lighter and shouting for an encore, but you get the picture. On the hospital wards it started to irk me that no one had discussed end of life with any of my dying cancer patients before they were rushed to the hospital for a pain crisis, or intubated in the emergency department because their lungs were no longer a match for the tumors invading every last alveoli. I was granted permission to speak to the director of the cancer center. So Dr. X and I had breakfast. Dr. Temel's article firmly gripped in my hand, or at least in my mind—etched as it was, I made my case for a tiny palliative care presence in the cancer center and he gave me a chance.
To be clear, there was palliative care going on in the cancer center before we arrived. Psychiatrists and physiatrists provided relief from pain and suffering and often saw patients through to a hospice referral. But these conversations occurred in hushed tones, avoiding the specter that Wendy and I introduced as embodied “angels of death,” hovering over spaces where loss of life was deemed a failure. We were seen as intruders by many in the oncology clinic, as reminders of the unacceptable.
I was raised in the medical tradition wherein nurses provided tenderness to patients and took orders from doctors—for the more “important” parts of care. When I transitioned to palliative care that hierarchy of value and power seemed meaningless, relegated to the same past that put women in the kitchen and where children were to be seen and not heard. My eyes opened to not only the beauty of exploding the old hierarchy in the form of the interdisciplinary team, but also to the critical nature of submerging together into the deep fraught waters that ebb and swirl when mortality is at stake. Wendy and I swam together—our long arms crashing through waves that poured over us and through us, waves of anger as administrators clipped our wings, waves of hope as we managed pain, and waves of devastation as we watched patient after patient, family after family, grieve and fall apart as we held them close.
Dr. X, with whom I had shared coffee and fruit that morning, was bombastic. Imposing in figure and disposition, he was known for his biting sarcasm. He did not hesitate to verbally tear a colleague apart, limb by limb, in front of an uncomfortable crowd. He was not a gentle leader. He laughed when I suggested a support group for oncologists to aid in the daily collateral trauma of wading through sickness and loss. But he gave us access and for that I am grateful. Wendy and I were invited to embark on a project wherein we automatically took on all of the most devastated patients, those diagnosed with unresectable pancreatic cancer. We saw all kinds of cancer that year—sarcoma, prostate, lung, and breast. None of them easy. Easy didn't need us—they got better with chemotherapy, immune therapy, surgery, and radiation. But there was nothing to compare with the sinking face, the shaking knees, and the rivers of tears that erupted from family and patient at the time of a diagnosis of advanced cancer of the pancreas. One patient, a former health care provider, once asked Wendy and I “Why couldn't I have gotten breast cancer?” as she endured week after week of draining infusions, the dreaded Folfirinox combination of chemotherapies, which she knew might give her only months more to live.
There was another patient, now long gone from this earth, whose effervescent spirit stayed with Wendy and me, a rare example of a human who could live in the moment with the wind at his back despite the crippling news of this disease. I'll call him Mr. Cheshire. Intelligent, with a hint of mischief as his new moniker betrays, he knew how this would end, but for months wouldn't engage in such discussions. He wasn't going to do anything until he was ready. He mountain biked and motorcycled in the hills of Big Bear, until he couldn't. His grief, in those months, erupted only when he couldn't keep up with his younger girlfriend. He didn't want to let her down. Despite his oncologist's pleas, he took prolonged breaks from chemotherapy to attend family weddings and to build up his strength for his outdoor adventures after which he would burst into clinic regaling us with stories, his face softened by the glow of time away from the harsh lights of the cancer center. Each time he met with Wendy and I, each time she spoke to him on the phone to refill his pain medications, he asked for assurances. He wasn't there yet, right? He still had more time? He flew past the 18-month mark, the time that he was given to live. And he somehow earned many months more. But one day things changed, as if overnight—his borrowed time repossessed. He creaked into the examination room in a wheelchair and we knew he was on his way out. In a hospital bed, as we ginned up his comfort medications, Mr. C finally let us discuss the end of his life. There was no hospice where he lived, off of any well-worn track. No one would scale those heights to visit him, day after day, to keep him at ease. We were at a loss. But then, as if a bright angel heard our prayers for this remarkable man, a lone agency agreed to take on Mr. C, to make that trek into the hills, to usher him to his ultimate home, surrounded by the tall pines and Quaking aspens and the love of his favorite people. Wendy and I held our breath as the ambulance drove him the 100 miles from the hospital doors to his oasis far above sea level. For days we wondered how he was and waited for a sign of his condition. And one day it came in the form of a text message that he sent to Wendy. The last we saw of him was a picture in his wheelchair, enfolded by trees, mountains rising behind him, holding a gigantic joint in front of his Cheshire grin.
To this day, Wendy and I look back on those days at the cancer center as some of the best of our careers. We had to develop thick skins to fight off the daily slings and arrows of those who did not appreciate our looming presence, introducing darkness into their well-lit spaces. We were “The Death Doctors,” “The Grim Reapers,” “The Angels of Death,” even “The Bobbsy Twins” (as though that was an insult!). But, more importantly, we were true partners and we were making change. Together we slowly shifted the fears of our colleagues toward gratitude. We knew we were succeeding when our phones chirped with urgent texts, pleading for our presence in rooms holding patients and families, who needed to be held with greatest care.
And we held them. With our strong mothers' arms we held them all. And they knew they were loved.