July 2007

Grant Results

National Program

Targeted End-of-Life Projects Initiative

SUMMARY

A team led by researchers at the Dana-Farber Cancer Institute in Boston surveyed more than 2,000 students and staff at 62 U.S. medical schools to assess the availability and quality of instruction in end-of-life care.

The team also analyzed medical students' competency in end-of-life care as measured by responses to selected items on the United States Medical Licensing Examination™.

Key Findings

  • More than 90 percent of respondents had positive views about the responsibility of physicians to help patients at the end of life prepare for death.
  • However, fewer than 18 percent of students and residents reported receiving formal end-of-life care education.
  • Thirty-nine percent of students and 31 percent of residents felt unprepared to address patients' fears about death and dying.

Funding
The Robert Wood Johnson Foundation (RWJF) supported the project from April 2001 through December 2004 with a $249,959 grant. The Dana-Farber team initiated the work earlier as a subcontractor to Brown University under a major RWJF-supported research project in end-of-life care (ID# 037188).

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THE PROBLEM

Health care professionals receive inadequate education in end-of-life care, according to a 1997 Institute of Medicine report (Approaching Death: Improving Care at the End of Life). This deficiency is a major barrier to improving medical services to the dying, the report said.

"First and most fundamentally, too many people suffer needlessly at the end of life, both from errors of omission (when caregivers fail to provide palliative and supportive care known to be effective) and from errors of commission (when caregivers do what is known to be ineffective and even harmful)," the report concluded.

Although an increasing number of U.S. medical schools had begun offering courses on end-of-life care, researchers at the Dana-Farber Cancer Institute—a teaching and treatment facility affiliated with Harvard Medical School—questioned whether there had been meaningful improvement. They wanted to assess the current status of medical education in end-of-life care.

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RWJF STRATEGY

RWJF pursued three strategies to improve care at the end of life:

  1. To improve the knowledge and capacity of health care professionals and others to care for the dying.
  2. To improve the institutional environment in health care institutions and in public policies and regulatory apparatus to enable better care of the dying.
  3. To engage the public and professionals in efforts to improve end-of-life care.

This grant fits the first strategy.

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THE PROJECT

A team lead by Dana-Farber Cancer Institute researchers surveyed more than 2,000 students and staff at 62 randomly selected U.S. medical schools to assess the availability and quality of instruction in end-of-life care.

The team also analyzed medical students' competency in end-of-life care as measured by responses to selected items on the United States Medical Licensing Examination.

The Dana-Farber team initiated the assessment in 2000 as part of a larger study conducted by the Brown University Center for Gerontology and Health Care Research in Providence, R.I. The Center—supported by a $2.4-million grant from RWJF (ID# 037188)—measured indicators of change in end-of-life care at the national, state and local levels.

Dana-Farber participated in that project as a subcontractor and subsequently received a separate RWJF grant of $248,654 (ID# 041472) to expand the scope of its work. The grant supported the Dana-Farber team from April 2001 through December 2004.

As of the date of this report, a separate Grant Results report on the seven-year Brown University study was in preparation.

The Surveys

The Dana-Farber team surveyed the following four categories of individuals affiliated with the 62 medical schools:

  • Fourth-year medical students, 1,455 respondents.
  • Residents (physicians in specialty training), 296.
  • Faculty, 287.
  • Associate deans for medical education or curricular affairs, 51.

The survey questionnaires—one for each of the four respondent groups—covered education, experiences and attitudes related to end-of-life care. For example, interviewers asked student respondents if they had had a course or clinical clerkship primarily focused on end-of-life care.

The faculty questionnaire included questions on how many hours the respondents had spent teaching end-of-life care in the last year and how much importance they attached to instruction in end-of-life care.

Interviewers at the Center for Survey Research at the University of Massachusetts-Boston conducted the student, resident and faculty surveys by telephone, from February–August 2001, according to Amy Sullivan, Ed.D., one of the lead researchers. Dana-Farber interviewers conducted the survey of deans by telephone September 2002–March 2003.

For a more detailed description of the survey methodology, see Appendix 1.

Medical Licensing Exam

As part of its assessment, the project team looked for a relationship between medical training and knowledge of end-of-life care as measured by the United States Medical Licensing Examination—a three-step exam for medical licensure in the United States.

Three experts in palliative care selected Step 3 exam questions relevant to end-of-life care and, based on those questions, created a system for compiling a summary "end-of-life competency score" for examinees. See Appendix 2 for the names of the three experts.

Staff of the National Board of Medical Examiners®—the organization that co-sponsors the licensing exam-determined the competency scores of medical students who participated in the survey and forwarded the data to the Dana-Farber team for analysis.

Although stripped of all personal identifying information, the data files allowed the team to link the scores to the examinees' survey responses.

Communications

Members of the research team reported the survey findings in two professional journals, presented their research at conferences and made the survey instruments available to medical schools, research groups and residency programs. See the Bibliography for details.

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FINDINGS

Research team members reported on the 2001 student, resident and faculty surveys in the Journal of General Internal Medicine ("The Status of Medical Education in End-of-Life Care"). Findings included:

  • More than 90 percent of respondents had positive views about the responsibility of physicians to help patients at the end of life prepare for death.
  • However, fewer than 18 percent of students and residents reported receiving formal end-of-life care education.
  • Thirty-nine percent of students and 31 percent of residents felt unprepared to address patients' fears about death and dying.
  • Nearly half of the student respondents "felt unprepared to manage their feelings about patients' deaths or help bereaved families."
  • More than 40 percent of respondents in all three survey groups reported that attending physicians and residents in their hospitals did not view dying patients as good teaching cases and did not consider meeting the psycho-social needs of dying patients to be a core clinical competency.

Team members reported on the 2002–2003 survey of deans in Academic Medicine ("End-of-Life Care in the Curriculum: A National Study of Medical Education Deans"). Findings included:

  • Eighty-four percent of the deans surveyed said it was "very important" that medical students learn how to provide care for dying patients.
  • Sixty-seven percent reported that insufficient time was currently devoted to end-of-life care in their curriculum.
  • The deans as a group underestimated student interest in end-of-life care. Only 27 percent believed students at their schools were "very interested" in the topic. However, 53 percent of the medical students interviewed in the 2001 survey described end-of-life care as "very important."
  • While the majority (59 percent) of the deans opposed introducing a required course on end-of-life care, they unanimously endorsed integrating end-of-life teaching into existing courses.
  • The deans perceived a lack of time and lack of faculty expertise as among the key barriers to incorporating more end-of-life training.

In an April 30, 2005, report to RWJF, the Dana-Farber team reported on its analysis of the Medical Licensing Examination data:

  • The team found no association between students' "end-of-life competency scores" and their survey responses regarding preparation and training experiences in end-of-life care. The team also found no variation in competency scores between schools.
  • Team members described the results as surprising and said work was ongoing with staff of the National Board of Medical Examiners to determine why the expected variation in scores did not materialize.

    In an interview, Amy M. Sullivan, Ed.D., one of the lead investigators, speculated that end-of-life training was relatively uniform across all schools, with none of the curricula sufficiently advanced to produce higher-scoring students.

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CONCLUSIONS

In the journal articles, the research team members wrote:

  • "Despite clear endorsement of the importance of learning end-of-life care and nearly universal agreement that physicians have a responsibility to help patients prepare for death, students and residents in the United States feel unprepared to provide, and many faculty and residents unprepared to teach, key components of good care for the dying." (Journal of General Internal Medicine)
  • "The strong support for end-of-life care education expressed by academic leaders in this study, combined with the high level of interest expressed in the authors' 2001 national survey of students, provide evidence of the potential for meaningful change in the undergraduate medical curriculum." (Academic Medicine)

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LESSONS LEARNED

  1. Anticipate difficulty in enrolling faculty in a research survey. Previous national studies of medical school faculty conducted by Dana-Farber (in 1993 and 1997) produced 80 percent response rates—nearly double the rate on the 2001 faculty survey (41 percent).

    The research team attributed the decrease to the low priority given palliative care by medical school faculty and to "a greater sense of time constraints and general increase in resistance to survey participation." (Dana-Farber report to RWJF.)

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AFTER THE GRANT

In November 2005, RWJF awarded Dana-Farber a $99,848, four-year grant (ID# 053976) to convene four meetings of leaders in palliative care to develop strategies for advancing education and training, clinical practice and research in the field.

AS RWJF ended its concentrated grantmaking in palliative care, staff viewed the meetings as an ongoing mechanism to identify the field's emerging leaders and build on previous advances in end-of-life services.

As of April 2007, Dana-Farber had held two of the four sessions-in Lake Bluff, Ill., in 2005, and Scottsdale, Ariz., in 2006. Each drew 35 participants.

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GRANT DETAILS & CONTACT INFORMATION

Project

Survey on Palliative Care in Medical Education

Grantee

Dana-Farber Cancer Institute, Inc. (Boston,  MA)

  • Amount: $ 249,959
    Dates: April 2001 to December 2004
    ID#:  041472

Contact

Amy M. Sullivan, Ed.D.
(617) 632-2442
Amy_Sullivan@dfci.harvard.edu
Susan D. Block, M.D.
(617) 632-6181
Susan_Block@dfci.harvard.edu

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APPENDICES


Appendix 1

Survey Methodology

Researchers randomly selected 62 of the 124 accredited four-year U.S. medical schools and used an American Medical Association (AMA) database to obtain a random sample of fourth-year students at the schools. The 62 schools were a stratified random sample, and were sampled with a probability proportionate to size (therefore, large schools had a slightly lower probability of being selected compared with small schools, so that students from large schools were not overrepresented in the sample).

The team also used AMA databases to obtain a random sample of third-year residents in internal medicine, surgery and family medicine programs at the 62 schools. From the Association of American Medical Colleges, the team obtained a listing of all full-time physician faculty members at the schools.

The team included residents and faculty who taught medical students and were likely to have some contact with dying patients.

For the survey of deans, the team identified potential participants by searching the Web sites of the 62 schools for associate deans of either medical education or curricular affairs.

The team developed four telephone surveys-one survey for each group-to determine attitudes and experiences related to end-of-life care.

Student, Resident and Faculty Surveys
The researchers based survey content on analysis of student and resident focus groups, literature reviews, model curriculum and recommendations from the 1997 National Consensus Conference for Medical Education in End-of-Life Care.

After pre-testing, the Center for Survey Research at the University of Massachusetts-Boston conducted the interviews during February–August 2001 using a computer-assisted telephone interview system.

The response rates were:

  • Students 62 percent.
  • Residents 56 percent.
  • Faculty 41 percent.

(The faculty response rate was low compared to previous Dana-Farber surveys. See Lessons Learned.)

Examples of questions:

  • For students:
    • "In medical school, have you taken a course or had a clinical clerkship that was primarily focused on end-of-life care, that would include hospice care & palliative care but not ICU or oncology?"
    • "Are there any courses or clinical clerkships offered at your medical school that are primarily focused on end of life care?"
  • For residents:
    • "During your residency, have you done a rotation that was primarily focused on end-of-life care, that would include hospice care & palliative care but not ICU or oncology?"
    • "In your residency program, are there rotations available that are primarily focused on end-of-life care?"
    • "On average, how would you rate your faculty in managing pain in terminally ill patients?"
  • For faculty:
    • "In the past year, have you taught any courses, delivered any lectures or made any formal presentations on end-of-life care, hospice care or palliative care?"
    • "In general, how important do you think it is that students still in medical school learn about how to provide care for dying patients-very important, moderately important, not very important or not important at all?"

Dean Survey
The research team designed the dean questionnaire to parallel the domains covered by the student, resident and faculty surveys and pre-tested it with medical education deans at three institutions not part of the study.

Interviewers at Dana-Farber conducted the survey September 2002–March 2003 after receiving training from a research team member and staff of the Center for Survey Research at the University of Massachusetts-Boston.

According to the published article, the response rate was 82 percent.

Examples of questions:

  • "How important do you think it is that medical students learn about how to provide care for dying patients? Is it very important, moderately important, not very important or not important at all."
  • "How supportive are you of having a required course primarily focused on end-of-life care in the curriculum? Are you very supportive, moderately supportive, moderately opposed or very opposed?"


Appendix 2

Palliative Care Experts

The following three experts in palliative care created a system for compiling a summary "end-of-life competency score" for Step 3 of the United States Medical Licensing Examination:

  • Susan Block, M.D., chief, division of psychosocial oncology and palliative care, Dana-Farber Cancer Institute and Brigham and Women's Hospital, and professor of psychiatry, Harvard Medical School, Boston. (Block was director of the RWJF-funded project.)
  • Vicki Jackson, M.D., M.P.H., associate director, palliative care service, and director, Palliative Care Fellowship, Massachusetts General Hospital, Boston.
  • Cynthia Pan, M.D., adjunct associate professor of geriatrics and adult development, Mt. Sinai School of Medicine, New York.

Susan Block, M.D.
Chief
Division of Psychosocial Oncology and Palliative Care
Dana-Farber Cancer Institute and Brigham and Women's Hospital
Professor of Psychiatry
Harvard Medical School
Boston, Mass.

Vicki Jackson, M.D., M.P.H.
Associate Director
Palliative Care Service
Director
Palliative Care Fellowship
Massachusetts General Hospital
Boston, Mass.

Cynthia Pan, M.D.
Adjunct Associate Professor of Geriatrics and Adult Development
Mt. Sinai School of Medicine
New York, N.Y.

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Articles

Sullivan AM, Lakoma MD and Block SD. "The Status of Medical Education in End-of-Life Care: A National Report." Journal of General Internal Medicine, 18(9): 685–695, 2003. Available online.

Sullivan AM, Warren AG, Lakoma MD, Liaw KR, Hwang D and Block SD. "End-of-Life Care in the Curriculum: A National Study of Medical Education Deans." Academic Medicine, 79(8): 760–768, 2004. Abstract available online.

Survey Instruments

"Medical Education in End-of-Life Care: Faculty Telephone Survey," Center for Survey Research, University of Massachusetts-Boston, fielded February–August 2001.

"Medical Education in End-of-Life Care: Fourth-Year Student Telephone Survey," Center for Survey Research, University of Massachusetts-Boston, fielded February–August 2001.

"Medical Education in End-of-Life Care: PGY-3 Resident Survey," Center for Survey Research, University of Massachusetts-Boston, fielded February–August 2001.

"Deans Survey 1," Dana-Farber Cancer Institute, fielded September 2002–March 2003.

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Report prepared by: Peter Meyer
Reviewed by: Michael H. Brown
Reviewed by: Marian Bass
Program Officer: Rosemary Gibson

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