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Teaching physicians how to talk
There is little disagreement that physicians need to do a better job of explaining a patient’s options at the end of life.
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ASCO in January released both a policy statement encouraging physicians to initiate discussions about palliation and end-of-life care, and a guide to help patients with advanced disease discuss treatment and palliative care options with their physicians. The organization is also planning to release clinical guidance later this year to “better integrate palliative therapy into oncology practice.”
“While improving survival is the oncologist’s primary goal, helping individuals live their final days in comfort and dignity is one of the most important responsibilities of our profession,” ASCO President George W. Sledge Jr., MD, said in a press release. “Patients have a right to make informed choices about their care. Oncologists must lead the way in discussing the full range of curative and palliative therapies to ensure that patients’ choices are honored.”
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Photo courtesy of Seattle Cancer Care Alliance |
There are many recommendations and guidelines to improve education in palliation and expand the use of end-of-life discussions. Studies have shown repeatedly that patients who make a plan for end-of-life care experience less pain, fear and stress; death is less stressful on the patient’s family and costs less overall. However, surveys show that training is still poor and physicians are uncomfortable discussing death and dying with their patients.
Part of the problem is that palliative care as a discipline only began appearing in medical school curricula in the past 15 years or so, said Anthony L. Back, MD, a professor of medical oncology at the University of Washington in Seattle and director of the Program in Cancer Communication at the Seattle Cancer Care Alliance. Accordingly, most physicians have never have gone through any formal training to learn how to discuss end-of-life issues “so that they don’t have a sense of how to bring up these difficult topics.”
“[Palliative care is] a tricky skill. You need practice, you need feedback, you need supervision and many physicians haven’t gotten that,” Back said. “Many oncologists did their training before this movement of thinking of palliation happened and so many of them feel that they have to focus on anti-cancer treatment until they decide that the anti-cancer treatment isn’t working. Then they make this big switch to move someone on to hospice, usually very near the end of life.”
A review of palliative care in undergraduate medical education published by Journal of the American Medical Association in 1997 showed that while most schools offer some kind of formal training in end-of-life care, training was largely informal, scattered all over the curriculum and mostly elective. Almost 90% of schools offered classes in end-of-life care, but only 11% offered a course in death education; only 26% of schools offered a course on end-of-life care as part of the standard curriculum; and 25% of students polled said they spent 1 hour or less dealing with end-of-life care in class.
Moreover, that survey by Billings and Block found that the “humanistic skills and attitudes” gained in the first 2 years of medical school were undermined in the final 2 years of school and into residency training.
Experts who spoke to HemOnc Today said the situation is largely unchanged in the 14 years since that survey was published, even though there is generally strong support for improved palliation education at medical schools and improved palliative care in treatment.
Interest in treating the dying
The idea of offering specialized care to the dying is a fairly new concept. A survey taken in 1961 found that only 10% of physicians told patients about a diagnosis of cancer and even fewer would inform patients that they were dying, James Tulsky, MD, professor of medicine and director of the Center for Palliative Care at Duke University, told the Senate Special Committee on Aging in 2000.
Although schools have rapidly adopted palliative care, Tulsky said there is still room for improvement.
“Most medical schools now have some sort of curriculum in palliative care, as well as physician-patient communication. It’s still not at the level it ought to be,” he told HemOnc Today.
“When you think of how much physician work depends on talking to people, the amount of time we actually spend learning how to do that is minimal. Considering that when people come to us, it’s for distress and suffering, the amount of time [we spend on] how to address that suffering in a holistic way is minimal. It’s much better than it was when I was a student and a resident, but we still have a ways to go.”
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The numbers support his belief. Results of a survey of 120 attendees of the 2004 ASCO Annual Meeting showed that only 20% those polled had completed a hospice or palliative care rotation. Respondents rated their general fellowship training more highly than their end-of-life training, felt attending physicians were more expert in non-end-of-life procedures and only 26% said they had received explicit teaching on depression at the end-of-life.
A national survey of 254 second-year fellows conducted by the same research team and presented at the 2009 ASCO Annual Meeting found similar results. About 25% of respondents had completed a palliative care rotation and 68% reported exposure to palliative care during their fellowship.
Results showed that respondents rated their instruction in palliative care less highly than the overall quality of fellowship teaching, and fellows rated attending oncologists less favorably in performing palliation skills compared with performing other oncology skills. Respondents also said they were less likely to be observed or receive feedback on end-of-life discussions than bone marrow biopsies, and many reported not receiving explicit education on managing depression at the end of life (68%); opioid rotation (67%); telling a patient he or she is dying (42%); and hospice referral (37%).
The situation is a bit better among practicing physicians. Results of a survey published by JAMA last year showed that NCI-designated centers were more likely to have at least one palliative care physician on staff compared with non-NCI centers (92% vs. 78%); more likely to have a palliative care program (98% vs. 78%); more likely to have an inpatient palliative care consultation team (92% vs. 56%); and an outpatient palliative care clinic (59% vs. 22%).
However, that same survey showed that only 23% of NCI centers had palliative care beds and only 37% operated a hospice. Additionally, only 38% of those centers had a palliative care fellowship program; among those who had such a program, only 18% had five or more fellows. Only 12% of those centers had a mandatory palliative care rotation for medical students.
Education is improving
Similar to Back, Thomas J. Miner, MD, associate professor of surgery at Alpert Medical School of Brown University, said that he had little or no formal education in palliative care as a medical student. He developed an interest as he saw a need for pain management and end-of-life care, and Brown now includes palliation education throughout the surgical curriculum at both the graduate and undergraduate levels. He said palliative education is far more comprehensive and better integrated into the curriculum than was the case when he was a medical student at Brown.
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“We have several modules we take students through,” he said. “One module focuses on how to communicate with patients, especially when breaking bad news. That’s been a very successful program. I’ve taught the surgical palliation program while visiting other institutions and it seems to be well-received. In teaching communication skills, we not only improve skills in oncology, but we make our young surgeons better doctors overall.”
As an institution, Duke University in Durham, N.C., takes palliative care seriously. Tulsky has served as director of the Center for Palliative Care since 2004. The center oversees training for nurses, medical students and in-house staff, along with maintaining an ACGME certified fellowship in Hospice and Palliative Medicine.
As part of a 12-month program, fellows participate in inpatient palliative care consults, work on an inpatient hospice unit and participate in longitudinal outpatient services. Fellows also undergo a mandatory 2-week pediatric rotation that includes rounds with the Neonatal-Infant Palliative Care Program, clinical experiences in pediatric hematology-oncology clinics, quality-of-life rounds for the Pediatric Bone Marrow Transplant and Intensive Care services and participation in family meetings. Fellows also go through individual educational sessions with pediatric faculty and interdisciplinary providers, including social workers and child-life experts.
The school has established the Institute on Care at the End of Life, created to “attend to the complexities of the social, cultural, moral, theological, public policy, medical and economic issues involved in living and dying.” The institute aims to move away from the idea that death is strictly a medical issue, or a failure of medical intervention, rather than a basic part of life. Accordingly, the institute is part of the Divinity School, rather than the medical school.
“Over time, what the institute has really ended up focusing on is the intersection of spirituality and end-of-life care,” Tulsky said. “The Center for Palliative Care runs the clinical programs, such as inpatient consultation, as well as the palliative care training programs.” Part of this training includes communication workshops, in which physicians meet with simulated patients in small groups.
“We give them an opportunity to practice and get feedback in real-time with those patients,” he said. “That’s [been] very, very effective.”
Benefits for patients, physicians
Tulsky said the US missed a great opportunity to foster better use of end-of-life conversations in 2010 when Congress adopted the Affordable Care Act. The original bill included provisions encouraging physicians and patients to discuss end-of-life care, but those provisions were stripped from the final bill amid controversy about their intent.
“That was just pure politics,” Back said. “It was just a distortion of what was in that bill. A lot of doctors currently say that a barrier to having these discussions is that they don’t get compensated. That’s a reasonable concern; doctors are pressed for time. The intent of the bill was to recognize that skill and time be recognized and compensated in a tiny way. It wasn’t enough money to dramatically change anyone’s practice patterns. If we’re going to talk about ways to match values to their medical decisions, that expertise ought to be recognized.”
The benefits of end-of-life planning for patients are well-known, but a 2008 survey published in Journal of Palliative Medicine show that there are significant benefits to physicians as well.
According to the results of a survey of 196 physicians, including 18 oncologists, those who “embraced a broader perspective on the physician role, encompassing both biomedical as well as psychosocial aspects of care” reported feeling greater satisfaction about the role they played with a dying patient and the patient’s family.
“We observed that oncologists who conceptualized their role to include both psychosocial and biomedical care also described close relationships with patients, satisfaction with the end-of-life care that they provided, and asking for and/or receiving collegial support,” the authors wrote. “Furthermore, we noted that these oncologists, who represented roughly half of the sample, focused on the communication process as a central aspect of care.”
What Jackson and colleagues determined was that there was a correlation between a physician’s ability to communicate and his job satisfaction and resistance to burnout. Physicians who were less adept communicators, those who did not have an explicit communication plan, reported a more distant relationship with the patient and family, a sense of failure at not being able to alter the course of the disease and an absence of collegial support. Those doctors also did not believe that they could effect change in the psychosocial situation.
Miner previously conducted a study of palliative operations and survival results were “awful.” But patients and families, almost universally, reported stellar satisfaction with their physicians even though they were not doing well by traditional outcome measures. Recent studies at Brown have confirmed that taking the time to engage with the patient and the family is associated with better outcomes following palliative operations.
In addition, he said, these interactions help physicians deal with the sense of failure that often arises after losing a patient.
“Even when we can’t cure with an operation or a drug, we still have opportunities to help our patients,” he said. “I always tell my residents that we want to be able to look patients in the eye and tell them we did the best we could. When we talk to them and spend the time with them, we can really look at patients and say that.” – by Jason Harris
For more information:
- Back AL. J Clin Oncol. 2003;21:2433-2436.
- Billings JA. JAMA. 1997;278:733-738.
- Buss MK. #8032. Survey of oncology fellows’ end-of-life training. Presented at: the 2005 ASCO Annual Meeting; May 3-7; Orlando, Fla.
- Buss MK. #9541. National survey of oncology fellows on palliative care education. Presented at: the 2009 ASCO Annual Meeting; May 29-June 2; Orlando, Fla.
- Detmar SB. J Clin Oncol. 2000;18:3295-3301.
- Hilden JM. J Clin Oncol. 2001;19:205-212.
- Hui D. JAMA. 2010;303:1054-1061.
- Jackson VA. J Palliat Med. 2008;doi:10.1089.jpm.2007.2480.
- Lewis MA. J Clin Oncol. 2011;doi:10.12/JCO.2011.35.1122.
- Tucker, T. Knowledge and utilization of palliative radiotherapy by pediatric oncologists. Current Oncology. Available at: www.current-oncology.com/index.php/oncology/article/view/460. Accessed: April 14, 2011.
Disclosures: No physician interviewed for this story reported any relevant financial disclosures.
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Should improving conversations about the goals of care focus on educating physicians or patients?
Physicians and patients need to be better educated about palliative care.
Patients and family members are best able to garner new communications skills when they have periods of relative calm, when they are not desperately dependent on their oncologists. That is when they can determine their personal coping styles and learn new approaches to the doctor-patient relationship.
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So many patients with advanced cancers, and most patients we see in a palliative care practice, are on a roller coaster with brief periods of respite punctuated by bad news, troublesome symptoms, complications, significant psychological stress and the threat of death. They may “collude” with their oncologist to avoid talking about serious concerns. Here, patients may be too dependent and needy to focus on communication skills, while the oncologist has the perspective and experience to guide such patients, anticipate their needs, and take responsibility for improved communication.
Studies of physician communication competencies reveal many deficits, especially in listening carefully, attending to emotions and responding empathically. These skills are not acquired quickly, but a number of studies happily demonstrate that physicians can learn new communication skills with intensive teaching. A recent short book by Back, Arnold and Tulsky, titled Mastering Communication With Seriously Ill Patients: Balancing Honesty With Empathy And Hope is a good place to start, but direct supervision of doctor-patient encounters — real or simulated — is the ideal method for improving physician communication skills.
Good communication is not about lecturing. A first task is to understand patients’ information preferences and decision-making preferences. Rather than assuming that patients want to be fully informed, we should ask whether they want to know all the details about their case, just broad strokes, only good news, or just leave information-sharing to the doctor and family. Likewise, do they want to be involved with all the details of decisions or just express their overall values, goals, and preferences to be interpreted by their physician, or defer to the family, doctors, or a religious leader?
J. Andrew Billings, MD, is an associate professor in the department of medicine at Harvard Medical School and former Director of the Palliative Care Service at Massachusetts General Hospital. Disclosure: Dr. Billings reported no relevant financial disclosures.
“End-of-life discussion” is the wrong way of looking at the issue.
The issue begins much earlier than that. The issue is, how to determine achievable goals for medical care, how to weigh benefits and burdens of different treatment options in the context of a patient and family’s overarching goals and values.
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A patient could have congestive heart failure that is medically managed but progressing. We could offer that patient a ventricular assist device. It is a big operation. It costs about $500,000. It carries some risk, but has been shown in randomized controlled trials to prolong life and improve quality of life. Even though this patient is not dying, this patient has a pretty serious need to assess the risks and benefits of the options, then weight those risks and benefits in the context of their own personal goals for care.
As to the issue of discussion about achievable goals of care — which should occur at any stage of an illness — unfortunately, there is no one answer. It’s not just the patient and family who should carry the responsibility for initiating these discussions, nor is it just the responsibility of the physician.
Clearly, both parties have to be better prepared and able to engage in these discussions. We’ve got a long way to go in both cases.
Would I argue that the primary weight of responsibility belongs on physicians? Yes, I would. Patients and families, particularly people dealing with advanced illness, are simply too sick, too vulnerable, too exhausted, too scared to be serving as their own quarterback in the health care system. It’s not an equal relationship between the patient and the doctor when patients are really sick. The doctor is healthy. The doctor has perspective and experience. The doctor has medical and scientific knowledge. The doctor has some idea what the future may hold. In my view, that creates a great responsibility on the part of the physician and the rest of the health care team to initiate discussions about the options and help patients and families to make the best choices for them, given the facts.
Do I believe most physicians have the training, expertise and time to conduct those conversations? I do not.
Diane E. Meier, MD, is director of the Center to Advance Palliative Care and the Catherine Gaisman Professor of Medical Ethics at Mount Sinai School of Medicine. Disclosure: Dr. Meier reported no relevant financial disclosures.