words by maryann brinley
sk any patient what they think a good death is and you get the same answers all the time,” says Frank Filipetto, DO, UMDNJ-School of Osteopathic Medicine (SOM), associate professor, family medicine.
“I don’t want it to be prolonged.”
“I don’t want to be in pain.”
“I don’t want to be a burden to my family.”
“I want to be in control and making my own decisions.”
“I want to die at home.”
Yet, at the end of their lives, most people have few of these wishes come true. Filipetto, vice-chair of the SOM Department of Family Medicine, and Lucia Beck Weiss, MS, SOM assistant professor, family medicine, believe that one of the reasons for these unwanted outcomes is because physicians are not trained to have “that frank discussion with the patient. Patients don’t know they are dying,” Filipetto says. “They think there is another treatment coming down the line for them. They believe there is a miracle out there. Sometimes, you have to tell someone, ‘There is no miracle.’” Even more difficult is accepting that the end-of-life goals of a caring physician may be very different from the patient’s. Filipetto, for instance, recalls the story of a dying Vietnam veteran whose only last wish was to die wearing his combat boots. “He saw his death as a fight similar to those he experienced while in combat. However, he knew that he would not return home from this one. Ask patients what their goals are, and you’ll often be rewarded. Our veteran heroically marched to battle with his hospice team,” Filipetto recalls.
But too many physicians are uncomfortable and can not transition their patients from a curative model to a palliative one.
Filipetto, Weiss and fellow family medicine physicians Marvin Herring, MD, and John Bertagnolli, DO, as well as medical staff at affiliated community agencies make sure this won’t happen when SOM-trained doctors are practicing medicine. “The osteopathic philosophy places emphasis on primary care of patients from womb to tomb. We have a greater responsibility to do end-of-life care right, as opposed to leaving it to someone else or subspecialty colleagues. Primary care doctors don’t need to abandon care or feel guilty when their patients are dying.”
Together, Filipetto and Weiss worked to obtain funding made available through the Robert Wood Johnson Foundation that has now expanded palliative care training from not only in the residency program, but into a fourth-year family medicine rotation focused on pain and end-of-life issues. In a four-week-long diverse curriculum, students are taught to look at impending death like any other illness or disease process.
“The best thing you can offer a family member or patient is to tell them what to expect,” Filipetto says. Students are taught how to set up a family conference and what should be included in the discussion. They learn the importance of asking what the patient knows about his or her illness, what the family understands, what their expectations are, as well as how to explain the options for treatment. They end up knowing the ingredients of good palliative or comfort care: therapies for pain, nausea, anxiety, depression and other incapacitating symptoms. And, Filipetto adds, “A lot of what we do in osteopathic medicine is hands on and there are osteopathic manipulative techniques that can be used for symptom management at the end of life.” Most importantly, students are trained to find scientific information that will allow them to offer the best information regarding chronic disease, prognosis and palliative care to patients and families. For instance, “does utilizing artificial nutrition or intravenous fluids in a dying patient extend or improve quality of life?”
Along with the traditional sit-down-and-listen-to-the-teacher components, there are lessons in advance directives, do-not-resuscitate (DNR) guidelines, hospice inpatient care, home visits, funeral parlors, and standardized patient encounters. The rotation offers a full spectrum of experiences and self-reflection to get students comfortable with this important part of medical practice.
“Death is just a part of life.” Yet, Weiss says these critical, “you-are-dying” conversations don’t happen very much between physicians and patients. “For a long time, the concept of a good death was never even considered. This topic isn’t addressed very often in medical school. We are all going to die. How horrible does it have to be?” And how expensive? A New England Journal of Medicine study reported that 30 percent of all Medicare dollars are spent during the last year of life and in 2009, that figure would be $70 billion — a costly price tag that doesn’t offer patients dignity or what they want from that good death wish list. A report issued by the Institute of Medicine concurred that not enough medical students are being trained on end-of-life issues.
“Medical education has dropped the ball on this whole concept of palliative care,” Filipetto says. “As a result, physicians often can’t accept death as an outcome and are unable or unwilling to prognosticate or tell a patient death is imminent. They often feel guilty and powerless because they were taught and shown by their mentors that life had to be preserved at all cost.” Filipetto says, “Some doctors may think, ‘Did I do everything I should have? Did I do something wrong?’ But this is all part of the education process here.” In fact, SOM students learn that, oftentimes, dying patients who are provided hospice level care, live longer and have a better quality of life compared to patients who receive aggressive attempts at curative care.
The stories are powerful and filled with surprises when patients are given honesty and the option to choose a palliative path. Filipetto recalls a mother dying of breast cancer who was asked, “What are your goals?” Her answer didn’t have anything to do with her medical care. It turned out she just wanted to be well enough to leave the inpatient hospice unit, get into her own car, and drive to upstate New York with her son so she could adopt a dog for him. The physician was doubtful but assured her, “We’ll try to make that happen.”
The day after her discharge, she and her son drove all the way to this place in her mind’s eye, rescued a dog, and drove home.
“She died the next day. Why so soon?” he asks. She was at home, the place at the top of everyone’s list of ingredients for a good death: not the hospital, not a nursing home, just her very own home.