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Terri Schiavo and the Pope: My Lessons Learned


 

As I write first column as President of SHM, palliative care has been much in the news. As a hospitalist who spends much of my time caring for people approaching the end of life and teaching about palliative care, these 2 weeks have kept me busy talking about end of life issues with family, friends, patients, colleagues, and the media. At the same time, these events have reaffirmed for me my choice of a career as a hospitalist and the central role that hospitalists play in providing the highest quality care for the sickest patients, in continually improving that care, and in refining the systems to deliver it.

Terri Schiavo died 2 weeks after her feeding tube was removed. Her life and death sparked protests and political debate. Yet in the end, what seems most profound is the great sadness and loss for her family. Soon after Terri Schiavo died, Pope John Paul II became acutely ill. Several days after a feeding tube was placed, the Pope died in his apartment at the Vatican, triggering a global outpouring of love and grief.

"In modern American health care, it is likely that Terri Schiavo and the Pope would have received care from a hospitalist"

In modern American health care, probably Terri Schiavo and the Pope would have received care from a hospitalist. If she were to arrive in a hospital after a cardiac arrest today, Terri Schiavo would likely be cared for by a hospitalist. It is the hospitalist who would have the first discussions with her family about her condition and prognosis. Similarly, most 84-year-old men with Parkinson’s disease, pneumonia, and a urinary tract infection would be cared for by a hospitalist. Hospitalists are serving as de facto ethicists and palliative care physicians, as we care for increasing numbers of people with serious and terminal illness. This shift in care provides an unprecedented opportunity for us to improve the quality of care for the half of all Americans who die in hospitals. Providing state of the art palliative care reinforces our efforts globally to improve the quality of care for all hospitalized patients. Furthermore, these cases highlight the need for research to define the best ways to deliver that care. As I thought about Terri Schiavo and the Pope, and saw the intense media spotlight on them, I kept thinking, “What does this mean for me?”

I have given this question a great deal of thought over the past week. What, if anything, do the deaths of Terri Schiavo and the Pope teach us? As I see it there are at least 3 important lessons for us as individuals and as hospitalists.

The first lesson is that each of us should consider the kind of care we would want if we were to suffer a devastating injury, as did Terri Schiavo, or be stricken with a progressive, debilitating illness, like the Pope. We should discuss our preferences for care with our loved ones and write them down. As hospitalists we should have these discussions routinely with our patients, document the conversations, notify the patient’s primary care physician, and encourage patients to share their thoughts with their loved ones. As a son, husband, brother, nephew, grandson, and father, I realized that one of the most important obligations I owed to my family was to make my wishes known, and to learn about the wishes of my loved ones. As a hospitalist, I realized that I owed it to my patients to help them express their preferences for care. What I learned echoed what we know about advance directives: You cannot predict what someone will say. Not unexpectedly, my mother, grandmother, and aunt told me that they would never want to live like Terri Schiavo. But in a complete surprise my aunt told me that my favorite uncle, who is blessed with a quick wit and brilliant sense of humor, wants to be kept alive as long as possible.

As a hospitalist, I know that my patients care deeply about these issues and are quite eager to discuss them. Talking with patients about these issues is not just a good thing to do, but ultimately improves quality of care by promoting care that is consistent with patient preferences and emphasizes our commitment to respect patients and advocate on their behalf. I still remember early concerns about hospitalists that we would be cowboys more interested in procedures and yelling “Stat!” than in being caring providers who took time to get to know our patients. Yet an early study of hospitalists that I was involved in found just the opposite. Hospitalists recognized the importance of palliative care and good communication with patients. As I made rounds in the hospital in late March, many patients were watching the vigil outside the hospice in Florida and talking about the Pope. Many patients wanted to know my thoughts. Using the communication skills I have honed over the years, and my cultural background of always answering a question with a question, I turned it around and asked them, “What do you think?” I suspect that patients will be using Terri Schiavo as an example of how they do or do not want to live―and die―for a long time. I will do my best to use this shared touchstone as a starting point for understanding their preferences: “Tell me what it is about Terri Schiavo that worries you?” By helping our patients express their preferences and encouraging them to discuss these with their loved ones, we may ease the burden of families who would otherwise have to make a difficult decision without direct knowledge of the patient’s choice.

The second lesson for us to embrace is that palliative care is a core competency for hospitalists. Palliative care is already identified as a core competency in the Core Curriculum under development by SHM. As part of our goal of improving the quality of care for all of our patients, we have the opportunity to dramatically improve end of life care and to identify people who would benefit from palliative care earlier in the course of illness. This opportunity represents a sacred trust and speaks to the most basic role of the physician to “cure sometimes and comfort always.” Ultimately, the deaths of Terri Schiavo and the Pope, although fundamentally different from each other, and unique in many respects, reaffirmed for me the importance of my role as a hospitalist in providing the highest possible quality of care for people facing serious illness and death. With these skills, we will secure our place as leaders in quality care and reap the rich rewards of using our humanity to help patients and families at one of the most important, profound, and intimate times.

The third lesson for us as hospitalists is that more research is needed to define the optimal ways to care for hospitalized patients. While the case of Terri Schiavo raised particularly thorny family issues that might defy the ability of research to clarify, issues of how best to care for patients like Terri Schiavo and the Pope and the millions of people like them with heart failure, deep vein thromboses, aspiration pneumonia, gastrointestinal bleeding, cancer, and myriad other conditions can be, must be, and will be investigated. The only question will be, by whom? As the providers of an increasingly large percentage of hospital care, we are on the front-lines of recognizing the clinical questions that arise and understanding the systems of care in which solutions must be implemented. Therefore we must play a central role in defining the questions and discovering the answers. Further, because we need research not only in how best to treat patients but also in how to ensure that patients receive these treatments, we need to conduct this research in community hospitals, where the majority of patients are cared for, and not just at academic centers.

In my year as President of SHM, I will continue to develop our organization’s founding mission and to serve hospitalists in their goal of providing the best quality of care to their patients and having satisfying, sustainable, and rewarding jobs. SHM will continue to lead and define the field of hospital medicine in education, leadership, quality, patient safety, and teamwork. In addition, I hope to use my unique skills and insights to focus our members on the central role of research in defining our field and the need for SHM to help direct that research. I will also highlight the importance of hospitalists in providing palliative care and in improving the care of patients with serious and terminal illness. I encourage each hospitalist to embrace these critical issues and invite you to join me in implementing this vision to advance research in hospital medicine and to improve palliative care in hospitals. The research committee has already completed a report on the potential role of SHM in research in hospital medicine that the Board of Directors will discuss at our meeting in May, and I am planning an initiative in palliative care. If you would like to participate in either initiative or simply want to share your thoughts and ideas about these or other important issues in hospital medicine, please contact me by email (stevep@medicine.ucsf.edu). My closing wish is that Terri Schiavo’s family will find comfort and closure, out of the media spotlight, and that the memory of the Pope is honored by the ongoing lessons of tolerance and peace that he taught.

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