I recently served as a solo hospitalist on our hospital’s newly formed non-teaching service, which our department created in response to the new rules for residents’ work hour limits. Doing the myriad patient care work largely on my own, answering pages, traversing floors, entering computerized orders, I found that I had less and less time to spend at the bedside with patients, learning about their lives outside of their illness. Even as the workday didn’t allow this indulgence, always the great privilege of being a doctor, I found that I needed to do it even more with the octo- and nonagenarian patients I had the privilege of serving. Forming a relationship and learning the values of these patients and their families became especially necessary as issues of end-of-life care and terminal illness presented unique medical challenges.
One patient was a 91 year-old woman who had bloody diarrhea, weight loss, and terrible discomfort from ischemic colitis. While agonizing in my head on how to relieve her pain and assist her appetite, I often escaped by sitting at her bedside, holding her hand and listening to her tell stories in her soothing grandmother’s voice of how she transcribed communiqué for Admiral Nimitz during World War II. This company may have been therapeutic for her (it certainly was for me), but trials of targeted medications were unsuccessful in relieving her symptoms. After briefly considering angiographic intervention, she was transferred to the hospice care unit. I was reminded of the challenging art of palliation, even while the goals of care were clear.
In another experience, establishing these goals was the first challenge. An 88-year-old woman with advanced dementia was hospitalized for the tenth time in six months for recurrent urinary tract infection and pneumonia, each time brought by her daughter who was not able to accept the deterioration of her mother’s health. Shortly after I initiated the topic of hospice and mentioned the word “death,” I was asked to leave the room and not to mention such issues again. Not a physician’s finest hour.
Another encounter was much more satisfying: a 94 year-old man with hematuria and painful bladder spasms who was found to have a large kidney cancer. With the help of the urology team, a palliative regimen for the bladder spasms was successful, and his son took him home to enjoy the family’s company after an easy decision for home hospice.
The roller coaster feelings from these and several other examples of the end-of-life needs of our aging population reminded me of the inadequacy of my training in palliative care, the relief of suffering that lies at the core of being a doctor. I’ve seen plenty of death, of course, saddened when efforts to save a life fail, but relieved when a long ICU stay only prolonged a terminally ill person’s suffering and kept the family from truly enjoying their loved one’s last days. But while the plentiful exposure to sickness and death in the traditional hospital-based internal medicine residency had provided incredible perspective of humanistic issues of medicine—the inevitability of death, individuals’ perceptions of quality of life, unresolved psychology of family relationships—my formal training in end-of-life care had been absent or disproportionately small.
Some might feel that medical education should be about anatomy and pathophysiology and that physician’s jobs are to identify disease, treat with medications and procedures, and aim to cure or manage this disease to improve mortality statistics. And when these aims fail, the physician’s task is unsatisfying but done. Often, when the decision to transition to terminally ill patients to hospice is made, usually very late in the dying process with quality of life already compromised, a sigh of relief is let out and an unfortunate sentiment “not doing anything for this patient” is adopted. Being more honest, others may feel that formalization of the human issues surrounding dying, in the way that we produce guidelines for hypertension and cancer screening, belies the complexity of individuals’ needs and falls outside the realm of allopathic medicine. Better to leave this to experts in psychology and the spiritual guidance of hospital chaplains.
But that doesn’t seem to be true—it never was when Osler and Hippocrates had anything to say about it—and it certainly isn’t satisfying. Doctors and other health care professionals have always been placed squarely in the face of not just death but in the days, and months, and years before death. Instead, rather than the lack of need, it seems that our system of financing and our fragmentation of care providers makes it easier to continue prescribing expensive treatments and more difficult to spend time listening to patients and families’ anxieties and values and serving their core psychological and social needs. Even on the physical realm, we are inadequately trained to provide the medical care that is needed to truly palliate someone’s recurrent angina, their bone pain from metastatic cancer, or their severe cough and dyspnea from end-stage COPD.
A 2003 survey of 1,455 medical students and 296 residents from over 62 medical schools found that trainees felt inadequately prepared on end-of-life care. While exposure to dying patients on clinical rotations improved their sense of comfort, students received no feedback about these experiences almost half the time. Residents also received inadequate feedback despite important decisions and felt uncomfortable teaching students about end-of-life care. We have not been trained and are not provided the forum for processing these experiences or feeling that they occupy as much value as physical medical problems.
Thankfully, since that time, a number of medical schools have adopted comprehensive curricula in palliative care, many of which are longitudinal across the 4 years of school, matching the evolution of the medical student’s exposure to patients. These curricula were developed in response to an action in the year 2000 by the Liaison Committee on Medical Education, which implemented guidelines on the inclusion of end-of-life care curricula for medical schools. At the University of New Mexico, the implementation of a palliative care curriculum improved students' comfort with dying patients and actually increased their desire for even more teaching on the subject. At the Northeastern Ohio University College of Medicine, an integrated curriculum has dramatically changed students’ view of health care and more than doubled the participation in the Palliative Care Student Interest Group. At the expert training level, the American Academy of Hospice and Palliative Medicine informs us that there are 82 active palliative medicine fellowship programs.
But our health care system has lagged. The incentives to focus on quality instead of quantity of years, on high-touch instead of high-tech care for the acutely and chronically ill are still inadequate, and the curative model still reigns. Payment schemes and multi-disciplinary team models need to be built so that when the choice for palliative care or hospice is considered, which is usually much earlier than current trends, the decision is influenced by the right reasons and financial barriers don’t get in the way of the right course. The changes in the residency work hour rules have elicited a widespread, almost consensus-like groan among the academic hospital and physician community. But they have also prompted a healthy debate about what constitutes thorough medical education and training. We should take this opportunity to ensure that palliative care is more comprehensively included in graduate medical education. Just like the medical care we provide to cure disease, the care that we render to relieve suffering and improve quality of life on the physical, mental, and social planes, is complex and challenging to learn; and, most importantly, it lies at the core of our mission as physicians.