Mercy to give its doctors training in caring for the terminally ill
By JUDITH VANDEWATER
Doctors aren't immune to feeling apprehensive in the face of their patients' terminal illnesses. A new study led by researchers at Mercy found that roughly three out of four doctors have moderate anxiety about caring for dying patients. Oncologists, pediatricians and surgeons feel the most anxiety.
Even a moderate level of anxiety can be problematic if it gets in the way of the therapeutic relationship and impedes a doctor's ability to guide his or her patients toward a "good death," said Dr. Timothy Smith, vice president of research for Mercy's Center for Innovative Care and one of the study's authors. So, as a result of the survey findings, Mercy plans to increase end-of-life education and training for its physicians to better prepare them for difficult conversations and their central role in providing medical guidance and emotional support to patients and families.
A well-meaning doctor who has not "connected" with a terminally ill patient and communicated about end-of-life decisions risks being unaware of the patient's wishes, concerns and needs, Smith said. He or she may give too much care, or not enough.
"When you interview families of patients who have passed away and you ask, what are you unhappy about your loved one's medical care in their dying days, they say things like the doctor was not supportive of the patient or the family on an emotional level. Or, the doctor didn't communicate," Smith said. "They wish their doctor had been more emotionally engaged.
"That is a real criticism of the mainstream medical education system," he said.
Largest study
The study on doctors' reactions to end-stage illness, "Assessing Attitudinal Barriers Toward End-of-Life Care," is published in the March issue of the American Journal of Hospice & Palliative Medicine and in that journal's web edition. Smith said that it is based on the largest survey of its kind in the medical literature. A research team led by Gary Dean Parker, manager of research services for Mercy Health Center in Oklahoma City, analyzed survey responses from 622 Mercy primary care and specialty physicians. Roughly 12 percent of the potential pool of 5,141 respondents completed the survey, which was conducted entirely within the Mercy system in Arkansas, Kansas, Missouri and Oklahoma.
The survey instrument, "The Physicians' End-of-Life Attitude Scale," was developed earlier by research team member Bert Hayslip, director of statistics at the University of North Texas in Denton, and modified for the study. The survey is a follow-up to a study of nurses' attitudes on end-of-life care that Parker conducted five years ago. Hayslip currently is comparing the data from the nurses' and physicians' attitude surveys. Parker said determining similarities and differences between nurses and doctors will be useful in designing training and in providing better cohesion in end-of-life care.
Respondents' answers to the physicians' attitude survey revealed their training and experience in end-of-life care and their exposure to hospice services, either professionally or personally, as in the context of care of a loved one. In general, physicians who made inpatient hospice visits had lower levels of anxiety in caring for patients nearing death. The researchers wrote that "it can safely be assumed that professional experiences, such as hospice visits, are effective in lowering anxiety across specialties."
Variance by specialty
Parker, who has a doctorate in nursing, said he was not surprised to find that oncologists scored highest on the survey's anxiety scale. "When you look at the nature of what oncologists do, their job is to keep you alive in dire circumstances and help you beat cancer. For them, death is truly the enemy."
Smith said an oncologist may be reluctant to talk with a patient about death because the oncologist may fear that conversation would be profoundly discouraging. "We know that patients who are hopeful tend to do better; they are better participants in their own care. I'm not saying (doctors) should dash hopes, but I say if doctors don't talk about it, if they don't connect period — whatever the outcome is — they are left to presume things. And if you make presumptions, you are going to be wrong sometimes. You may think you know what the patient wants you to do, but you may not be doing what the patient wants you to do because you haven't had a meaningful conversation about it."
Pediatricians ranked second highest on the anxiety scale with respect to end-of-life conversations and care. As a group, primary care physicians including family practitioners had the least apprehension about end-of-life care, although it was still a significant factor for the large majority.
Clinician's evolving role
The research team suggests that a clinician's role changes, but is not diminished, when curative care is no longer an option. They cited the New England Journal of Medicine's definition of end-of-life care as "providing psychosocial, spiritual and bereavement support for the patient, not only medical support."
"We talk about the practice of medicine being both an art and a science," said Smith. "You really want a clinician that pays attention to both your physical health and your emotional health because the two are inextricably intertwined."
Smith recalled a lesson on compassion he learned early in his medical career. "Isn't it depressing when you get to a point where there is nothing you can do?" he had asked an oncologist. The oncologist responded, "'Ah, that is where you are wrong, there is always something you can do. You can give them emotional support; you can make them more comfortable. You can treat their pain. You can make sure they have every chance to maintain their dignity.' Those words have stuck with me for over 20 years," Smith said.
Parker said that early in his nursing career he too had had an indelible experience related to a physician's treatment of a dying patient; but, in this instance at a Maryland hospital, the doctor added to his patient's distress. As Parker settled the patient back into his room following an exploratory surgery, "The surgeon walked up and said, 'I'm sorry I couldn't help you, you are going to die soon.'
"He literally turned around and walked out of the room and left me with this guy. It was horrible. It devastated this gentleman and his family."
Parker said that while it may not be possible to teach compassion, it is possible to structure a course that will provide physicians more insight into human nature. He envisions including pastoral care representatives in shaping and presenting the course.
Smith said he won't have a part in designing the education piece, but he would like it to include information about what to say and what to avoid saying during conversations with patients about death and dying. "We are not trained in that," Smith said. "Oftentimes, people who don't know what to say don't say anything at all. They hedge or they avoid the topic."
Smith said that for a physician, this reticence can cause a missed opportunity to relieve a patient's suffering, to help the patient cope and to maintain dignity in their waning days.