There's news today that the White House seems ready to strike reimbursement for end-of-life counseling sessions from the health reform bills in order to save it from critics who manipulated the concept into fictitious "death panels" staffed by cold-hearted bureaucrats who would decide "when to pull the plug on Grandma." That's a real shame. I hope that primary care clinicians and others will continue having these discussions with their patients nonetheless, because they are sorely needed - not to save money for the government and private insurers, but because without them, our grandparents (and our parents, and ourselves, for that matter) have little chance to die with dignity. (Strongly recommended reading: How We Die by Sherwin Nuland, a Yale surgeon's sober reflections that will poignantly dispel any myths you may have about how death occurs in the U.S.)
As a medical student, my first experiences with end-of-life care occurred in Bellevue Hospital in New York City, a 150 year-old institution famous for caring for the city's poor and being a rite-of-passage learning experience for generations of medical students. I inserted my first "chest tube" into a man from Thailand who spoke no English and was dying painfully from incurable rectal cancer. After we ran out of sites to place intravenous lines for his medication and intravenous fluids, a 1st year surgical resident inserted a "central line" for access directly into his neck veins, but managed to nick the top of his right lung in the process (a common complication of this procedure). In order to re-inflate his collapsed lung, I used what was essentially a large pair of sterilized pliers to punch through his chest wall (yes, it's almost as painful as it sounds to read) and force in a large plastic tube connected to suction. None of these procedures, incidentally, would have been necessary had this man chosen hospice care instead, but no one had ever bothered to find a translator to talk to him about it. So he lived the last few days of his life, as it turns out, alone and with a tube in his chest.
My second encounter with death was no better. For several weeks during my 4th year, I cared for an elderly woman who was dying slowly from metastatic colon cancer. Surgeons had removed most of her large intestine, but were unable to completely remove the cancer that had spread to her liver and bones. (This type of cancer, by the way, is almost completely preventable with colorectal cancer screening, the topic of a previous blog - but only 53% of eligible adults receive such screening.) After the surgery, her kidneys failed, and her wound healing was so poor that they were unable to close the surgical incision. Day after day I took a scalpel to the outer edges of the incision, carving away blackened, dead tissue; day after day I searched in vain for more sites to draw blood from her battered, bruised veins; and finally resorted to painful arterial punctures to get the laboratory tests that I was told we needed. Unlike my earlier patient, she and her family spoke perfect English; but she was essentially comatose and the family (who filled the sterile hospital room with flowers, balloons, and photos) seemed to never be around when the doctors were at the bedside.
On my last night on call at Bellevue, the inevitable happened - my patient stopped breathing, her heart stopped beating, and having received no orders to the contrary, we attempted to revive her. As I performed CPR for the first time on a real patient, I remember thinking how brittle her bones had become from the cancer, and how easily her ribs shattered under the weight of my chest compressions. The "Code Blue" team, knowing nothing at all about the patient, swarmed into the room, donning gowns and gloves inserting lines into every orifice. As we worked futilely to revive this dying woman, her bowels reflexively emptied one last time, soiling the sterile towels. We worked on her for twenty minutes, and when it was over, the room reeked of blood and urine and feces.
As the only person around who remotely knew the patient, I dutifully made the middle-of-the-night call to give the news to her sons and daughters. They sounded surprised, which shook me, since I understood metastatic cancer as a death sentence (which it is, but no one had explained this to them, they said). Sad to say, these events repeat themselves on a daily basis at hospitals all over America, where end-of-life discussions are pushed aside by misrepresentations, false hopes, and a technologically-driven, unrealistic, never-give-up mindset that pervades our broken health care system. How many medical students and doctors in training are, right now, learning about death this way? Will these be the medical professionals who attend to your loved ones when they reach the ends of their lives? Is this the kind of care you would wish for them?