Terminal care in primary care postgraduate medical education programs: A national survey James D. Plumb, MD Mary Segraves, MD
As our society progresses, as critical evaluation of the use of life sustaining technology and hospital utilization continues, and as patients and families assume a greater role in the decision making process regarding appropriate medical care, more physicians will be expected to provide, or be familiar with, effectiveterminal care. As Daniel Callahan writes in his book, What Kind of Life: “The great value of the hospice movement is its contribution to the care ofthe dying and to opening up, once again, the possibility of accepting illness and deathin an affirmative way.1 However, this affirmation is not widely accepted. Even though hospice care has moved into the mainstream of the health care system,2 hospice programs in the United States care for only 10 to James D. Plumb, MD, Department of Family Medicine, Thomas Jefferson University Hospital, Philadelphia, Pennsylvania. Mary Segraves, MD, Department of Family Medicine, Thomas Jefferson University Hospi-
32
20 percent of patients who die from cancer each year, much less for patients dying from the many other chronic illnesses, and for only one-third of patients who die in severe pain.3 Physicians have a specific responsibility toward patients who are hopelessly ill, dying, or in the end stages of an incurable disease. Implementation of accepted policies in terminal care has been deficient in many areas, including the timely discussions with patients about dying, and the education of medical students and residents.4 Barriers to appropriate terminal care include an inadequate knowledge base and inappropriate attitude toward pain and symptom control and use of hospice services.5 The American Academy ofHospice Physicians is presently working on a variety of projects, including providing education programs and learning materials for hospice clinicians, and promoting hospice education for medical students and other clinicians in training. However, “the attitudes that pre-
dude the acceptance of hospice, either as an organized program or a philosophical guide to caring for the dying patient are rooted in the strong emphasis on curative and technological intervention in medical training today.”6
Physicians have a specific responsibility towardpatients who are hopelessly i14 dying, or in the end stages of an incurable disease. A variety of personal factors shape these attitudes toward the care of, and communication with, dying patients and their families.7~°For example, medical students having personal experience with death from cancer of someone significant to them, exhibited a stronger belief in a patient’s abilities to prepare for and accept death than did those students without such personal
The American Journal of Hospice & Palliative Care May/June 1992
Downloaded from ajh.sagepub.com at UNIVERSITE DE MONTREAL on June 22, 2015
loss.8 In addition, the more experience students have with loss by death, the more they avoid visiting and communicating with dying patients or their families, and the more they value death education courses.1° There has been an increasedemphasison formal death education in United States medical schools, although it is not required in many of them.1’ The content and type of instructors in formal death education varies and includes a preceptorship in a hospice program,12 and assignments of students to on-call clergy.13 Studies assessing the success of these programs are few. Little has been written about death education and experiences in terminal care in postgraduate medical training programs. In an attempt to assess the scope and methods ofterminal care education in primary care postgraduate educational programs, a survey was mailed to 1,168 accredited residency programs in Family Medicine, Internal Medicine/ Pediatrics, and fellowship programs in Geriatrics. First mailing resulted in a 33 percent response, and a second mailing increased the total response rate to 50.9 percent. The response rate per type of program was as follows: Percent Family Medicine Internal Medicine Pediatrics Med/Peds Geriatrics Fellowships Total
2 17/382 228/450 104/226 14/40 32/70
56.8 50.6 46.0 35.0 45.7
595/1,168
50.9
Results The residents/fellows in the responding programs annually coordinate the care of the following numbers of terminally ill patients (see Table 1). Formal training in aspects of terminal care is provided in the following manners: 14.9 percent (89) of programs provide no formal training.
Table 1. 0
~ Postgraduate
Year 1 Year 2 Year 3 Fellows
11.7 8.9 10.0
1-5
6-10
-~-
-~-
37 28 26 74
17.7 28.0 27.0 6.2
• Ofthe 506 programs providing some formal training, 92 percent (464), do so by lecture.
• 30 percent (152) use journal clubs.
20.1 10.0 21.0 8.1
.
• Care of individual patients entered in a hospice program —33 percent (167).
In 22.8 percent of responding programs, a clergyperson is part of the residency/fellowship faculty; of these, 58 percent are part-time and 33 percent full time. Respondents rated the degree to which their training program prepares residents/fellows to care for the terminally ill in nine areas, on a scale ranging from “exceptionally well” to “not at all” (see Table 2). In areas of spiritual assessment and insurance regulations, 62 percent and 64 percent prepare vaguely or not at all.
• Serving as a member of a hospice team 9 percent (46). —
• Residents/fellows are exposed to the principles of pain management in the terminally ill patient in 92.4 percent of programs.
.
• A hospice program is available in the area for referral of patients from a program’s hospital or outpatient practice site in 84 percent ofrespondents.
Symptom control Deteimining prognosis Spiritual assessment Insurance regulations Bereavementcare Stages of dying Family management Home care
13.5 14.0 15.0 6.8
Little has been written about death education and experiences in terminal care in postgraduate medical training programs.
• l7percent(87)usearotationin a hospice program (47 percent [41] of these are required rotations).
Pain management
>21
Faculty members are formally involved in a hospice program in 32.2 percent (192) of the responding programs. Of these faculty members, 52 percent serve as medical directors; the remainder as a member of a hospice team.
• 21 percent (108) use required readings.
Table 2.
11-20 %
Exceptionally Well %
Very Well %
5.3 6.3 9.1 1.5 1.2 2.9 4.5 6.1 5.5
34,4 37.1 36.7 9.0 7.2 14.1 22.8 25.9 26.6
The American Journal of Hospice & Palliative Care May/June 1992 Downloaded from ajh.sagepub.com at UNIVERSITE DE MONTREAL on June 22, 2015
Adequately %
Vaguely %
Not at all %
48.6 49.2 42.9 27.5 27.5 39.0
10.7 6.6 9.9 49,4 48.1 35.6 23.4 23.3 22.5
1.0 0.8 1.4 12.6 16.0 8.4 4.7 3,7 4.8
44.6 40,9
40.7
33
In an open section of the survey reserved for comments, 15 percent of respondents made notations, requests or comments. • We should be more involved in terminal care 15 programs. —
• Would like information on programs, curriculum 14 programs. —
• Extent of knowledge and skills dependent on resident’s interest 5 programs. —
• “Lip service” given to hospice concepts. • Given little emphasis in our medicine program. • Formal hospice program badly needed. • Hospice-type care represents a challenge to family physicians. • Increasing spiritual teaching; something we must do. • Addresses important problems. • Need to upgrade our curriculum in these areas. • Hospice care low priority in legislature. • We talk a lot but most patients die on a ventilator. • Actively involved attending can promote resident’s growth in terminal care. • Residents havebecome experts in terminal care because of AIDS epidemic in San Francisco. • Best and most effective means of education is primary role models. • Pediatric dying patients usually at larger center.
34
• Difficult questionnaire for pediatric training.
5) Clergy are involved as faculty in only 22 percent of the training programs.
• Survey letter should be sent to oncologists with specific interest and expertise in terminal care.
6) In over 60 percent of programs, residents/fellows are prepared vaguely or not at all in the areas of spiritual assessment and insurance regulations; and in over 40 percent, vaguely or not at all in bereavement care.
• Our pediatric program has a bereavement committee. Nearly 46 percent of respondents requested a summary reportof the survey.
7) Despite literature to the contrary,’8”9 90 percent of programs prepare their graduates adequately or better in determining prognosis.
Clergy are involved as faculty in only 22 percent of the training programs.
Suggestions to improve the scope and depth of terminal care education in residency/fellowship programs include:
Summary Even though a great deal is being done in terminal care post-graduate education:
A) Allowing residents/fellows more opportunity to coordinate the care of terminally ill patients.
1) In a majority of training programs, residents/fellows annually coordinate the care of 10 or less terminally ill patients.
B) Having more hospice programs approach training programs to provide educational opportunities and information about services.
2) Nearly 15 percent of programs provide no formal training in terminal care.
C) Having more faculty-serving hospice programs involve residents/fellows in their activities.
3) Despite the presence of a hospice program in the area of a majority of the training programs a) only 17 percent of programs use a hospice rotation, and only one-half of these are required; b) a third of the programs have residents/fellows taking care of patients in a hospice program; c) only 9 percent of programs have residents/fellows serving as a member of a hospice team.
D) Identifying interested and knowledgeable clergy and involving them in the formal educational system.
—
E) Developing a coordinated system for training programs to exchange curricular materials and ideas, e.g. through working groups in the various specialty societies and their educational committees. The Society of Teachers of Family Medicine recently authorized the formation of Working Group on Home/ Hospice Care. The goals of this
4) Even though faculty are involved in hospice care in nearly a third of programs, only 17 percent of programs use a hospice rotation for training.
The American Journal of Hospice & Palliative Care May/June 1992
Downloaded from ajh.sagepub.com at UNIVERSITE DE MONTREAL on June 22, 2015
4. Wanzer SH, et al: The physicians responsibility toward hopelessly ill patients. NEJM, 1989;320:844-849
Working Group include: 1) Developing a repository for pooling of information and resources.
5. Rhymes J: Hospice care in America. JAMA,
1990 ;264-369-372
2) Identifying and developing a formal network of individuals in family medicine education involved in home/hospice care.
6. Bulkin W, Lukashok H: Rx for dying: The case for hospice. NEJM, 1988;318:376-378
3) Reviewing and evaluating existing curricular materials.
8. Cohen RE, et al: Attitudes toward cancer. Cancer, 1982;6:12l8- 1223
4) Developing a liaison with other specialty societies and groups (such as the Academy of Hospice Physicians, American Academy of Home Care Physicians, The STFM Task Force on Geriatrics Education, and the Society of General Internal Medicine).
9. Jordan TJ: A comparison of levels of anxiety of medical students and graduate counselors about death. 10. BleekerJAC, Pomerantz HB: The influence of a lecture course in loss and grief on medical students: an empirical study of attitude formation. Medical Education, 1979;l3:1l7-l28
5) Identifying funding sources for research in home/hospice care.
12. Cassileth BR: Medical studentsreactions to a hospice preceptorship. J Cancer Ed, 1989;4:261-263
6) Defining and developing specific competencies required to care for individuals at home, or who are terminally ill.
13. Davis G, Jessen A: Anexperiment in death education: medical students andclergy “oncall” together. Omega, 1980;1l:157-165
7. Kitchen AD: Second-year medical students’ experiences with death among their families and friends. J Med Educ, l989;61:760- 761
11. Dickinson G: Changes in death education in US medical schools 1975-1985. J Med Educ, l985;60:942-943
14. Richards Al, Schmale AR: Psychosocial conferences in medical oncology. Role in a training program. Ann mt Med 1974;80:541-5
7) Identifying and distributing the varied insurance regulations and changes regarding home/hospice care reimbursement.
15. Hillier R: Palliative medicine. BMJ, 1988;297-874-5 16. Hansen JP, et al: Treat or refer: patient’s interest in family physician involvement in their psychosocial problems. J Fam Prac 1987;24:499-503
F) Disseminating curricular materials, particularly related to spiritual assessment, insurance regulations and bereavement care. D
17. Berman 5, VifiarrealS: Use ofseminar as an aid in helping interns care for dying childrenand their families. Clinical Pediatrics 1983;22: 175179
References
18. Forster LE, Lynn J: Predicting life span for applicants to inpatient hospice. Arch ofInt Med 1988;148:1586-1591
1. Callahan D: What kind of life. Simon and Schuster, New York, 1990:146
19. Parkes CM: Accuracy of predictions of survival in laterstages ofcancer. BMJ, l982;2:29-3 1
2. Lukashok H: Hospice care under Medicare — an early look. Presented atthe International Conference on Health Policy, Jerusalem, June 7-12, 1987
DOES YOUR LIBRARY SUB SCRIBE to the
American Journal of Hospice & Palliative CareTM
If not, ask for a complimentary copy for your librarian and/or library committee
American Journal of Hospice
& Palliative Care Boston Post Road Weston, MA 02193
470
617/899-2702
Fax: 617/899-4361
3. Marcano J: Are physicians referring their patients to hospice care? Hospice Update, 1990;4:8-9
The American Journal of Hospice & Palliative Care May/June 1992
Downloaded from ajh.sagepub.com at UNIVERSITE DE MONTREAL on June 22, 2015
35
As our society progresses, as critical evaluation of the use of life sustaining technology and hospital utilization continues, and as patients and families assume a greater role in the decision making process regarding appropriate medical care, more physicians will be expected to provide, or be familiar with, effectiveterminal care. As Daniel Callahan writes in his book, What Kind of Life: “The great value of the hospice movement is its contribution to the care ofthe dying and to opening up, once again, the possibility of accepting illness and deathin an affirmative way.1 However, this affirmation is not widely accepted. Even though hospice care has moved into the mainstream of the health care system,2 hospice programs in the United States care for only 10 to James D. Plumb, MD, Department of Family Medicine, Thomas Jefferson University Hospital, Philadelphia, Pennsylvania. Mary Segraves, MD, Department of Family Medicine, Thomas Jefferson University Hospi-
32
20 percent of patients who die from cancer each year, much less for patients dying from the many other chronic illnesses, and for only one-third of patients who die in severe pain.3 Physicians have a specific responsibility toward patients who are hopelessly ill, dying, or in the end stages of an incurable disease. Implementation of accepted policies in terminal care has been deficient in many areas, including the timely discussions with patients about dying, and the education of medical students and residents.4 Barriers to appropriate terminal care include an inadequate knowledge base and inappropriate attitude toward pain and symptom control and use of hospice services.5 The American Academy ofHospice Physicians is presently working on a variety of projects, including providing education programs and learning materials for hospice clinicians, and promoting hospice education for medical students and other clinicians in training. However, “the attitudes that pre-
dude the acceptance of hospice, either as an organized program or a philosophical guide to caring for the dying patient are rooted in the strong emphasis on curative and technological intervention in medical training today.”6
Physicians have a specific responsibility towardpatients who are hopelessly i14 dying, or in the end stages of an incurable disease. A variety of personal factors shape these attitudes toward the care of, and communication with, dying patients and their families.7~°For example, medical students having personal experience with death from cancer of someone significant to them, exhibited a stronger belief in a patient’s abilities to prepare for and accept death than did those students without such personal
The American Journal of Hospice & Palliative Care May/June 1992
Downloaded from ajh.sagepub.com at UNIVERSITE DE MONTREAL on June 22, 2015
loss.8 In addition, the more experience students have with loss by death, the more they avoid visiting and communicating with dying patients or their families, and the more they value death education courses.1° There has been an increasedemphasison formal death education in United States medical schools, although it is not required in many of them.1’ The content and type of instructors in formal death education varies and includes a preceptorship in a hospice program,12 and assignments of students to on-call clergy.13 Studies assessing the success of these programs are few. Little has been written about death education and experiences in terminal care in postgraduate medical training programs. In an attempt to assess the scope and methods ofterminal care education in primary care postgraduate educational programs, a survey was mailed to 1,168 accredited residency programs in Family Medicine, Internal Medicine/ Pediatrics, and fellowship programs in Geriatrics. First mailing resulted in a 33 percent response, and a second mailing increased the total response rate to 50.9 percent. The response rate per type of program was as follows: Percent Family Medicine Internal Medicine Pediatrics Med/Peds Geriatrics Fellowships Total
2 17/382 228/450 104/226 14/40 32/70
56.8 50.6 46.0 35.0 45.7
595/1,168
50.9
Results The residents/fellows in the responding programs annually coordinate the care of the following numbers of terminally ill patients (see Table 1). Formal training in aspects of terminal care is provided in the following manners: 14.9 percent (89) of programs provide no formal training.
Table 1. 0
~ Postgraduate
Year 1 Year 2 Year 3 Fellows
11.7 8.9 10.0
1-5
6-10
-~-
-~-
37 28 26 74
17.7 28.0 27.0 6.2
• Ofthe 506 programs providing some formal training, 92 percent (464), do so by lecture.
• 30 percent (152) use journal clubs.
20.1 10.0 21.0 8.1
.
• Care of individual patients entered in a hospice program —33 percent (167).
In 22.8 percent of responding programs, a clergyperson is part of the residency/fellowship faculty; of these, 58 percent are part-time and 33 percent full time. Respondents rated the degree to which their training program prepares residents/fellows to care for the terminally ill in nine areas, on a scale ranging from “exceptionally well” to “not at all” (see Table 2). In areas of spiritual assessment and insurance regulations, 62 percent and 64 percent prepare vaguely or not at all.
• Serving as a member of a hospice team 9 percent (46). —
• Residents/fellows are exposed to the principles of pain management in the terminally ill patient in 92.4 percent of programs.
.
• A hospice program is available in the area for referral of patients from a program’s hospital or outpatient practice site in 84 percent ofrespondents.
Symptom control Deteimining prognosis Spiritual assessment Insurance regulations Bereavementcare Stages of dying Family management Home care
13.5 14.0 15.0 6.8
Little has been written about death education and experiences in terminal care in postgraduate medical training programs.
• l7percent(87)usearotationin a hospice program (47 percent [41] of these are required rotations).
Pain management
>21
Faculty members are formally involved in a hospice program in 32.2 percent (192) of the responding programs. Of these faculty members, 52 percent serve as medical directors; the remainder as a member of a hospice team.
• 21 percent (108) use required readings.
Table 2.
11-20 %
Exceptionally Well %
Very Well %
5.3 6.3 9.1 1.5 1.2 2.9 4.5 6.1 5.5
34,4 37.1 36.7 9.0 7.2 14.1 22.8 25.9 26.6
The American Journal of Hospice & Palliative Care May/June 1992 Downloaded from ajh.sagepub.com at UNIVERSITE DE MONTREAL on June 22, 2015
Adequately %
Vaguely %
Not at all %
48.6 49.2 42.9 27.5 27.5 39.0
10.7 6.6 9.9 49,4 48.1 35.6 23.4 23.3 22.5
1.0 0.8 1.4 12.6 16.0 8.4 4.7 3,7 4.8
44.6 40,9
40.7
33
In an open section of the survey reserved for comments, 15 percent of respondents made notations, requests or comments. • We should be more involved in terminal care 15 programs. —
• Would like information on programs, curriculum 14 programs. —
• Extent of knowledge and skills dependent on resident’s interest 5 programs. —
• “Lip service” given to hospice concepts. • Given little emphasis in our medicine program. • Formal hospice program badly needed. • Hospice-type care represents a challenge to family physicians. • Increasing spiritual teaching; something we must do. • Addresses important problems. • Need to upgrade our curriculum in these areas. • Hospice care low priority in legislature. • We talk a lot but most patients die on a ventilator. • Actively involved attending can promote resident’s growth in terminal care. • Residents havebecome experts in terminal care because of AIDS epidemic in San Francisco. • Best and most effective means of education is primary role models. • Pediatric dying patients usually at larger center.
34
• Difficult questionnaire for pediatric training.
5) Clergy are involved as faculty in only 22 percent of the training programs.
• Survey letter should be sent to oncologists with specific interest and expertise in terminal care.
6) In over 60 percent of programs, residents/fellows are prepared vaguely or not at all in the areas of spiritual assessment and insurance regulations; and in over 40 percent, vaguely or not at all in bereavement care.
• Our pediatric program has a bereavement committee. Nearly 46 percent of respondents requested a summary reportof the survey.
7) Despite literature to the contrary,’8”9 90 percent of programs prepare their graduates adequately or better in determining prognosis.
Clergy are involved as faculty in only 22 percent of the training programs.
Suggestions to improve the scope and depth of terminal care education in residency/fellowship programs include:
Summary Even though a great deal is being done in terminal care post-graduate education:
A) Allowing residents/fellows more opportunity to coordinate the care of terminally ill patients.
1) In a majority of training programs, residents/fellows annually coordinate the care of 10 or less terminally ill patients.
B) Having more hospice programs approach training programs to provide educational opportunities and information about services.
2) Nearly 15 percent of programs provide no formal training in terminal care.
C) Having more faculty-serving hospice programs involve residents/fellows in their activities.
3) Despite the presence of a hospice program in the area of a majority of the training programs a) only 17 percent of programs use a hospice rotation, and only one-half of these are required; b) a third of the programs have residents/fellows taking care of patients in a hospice program; c) only 9 percent of programs have residents/fellows serving as a member of a hospice team.
D) Identifying interested and knowledgeable clergy and involving them in the formal educational system.
—
E) Developing a coordinated system for training programs to exchange curricular materials and ideas, e.g. through working groups in the various specialty societies and their educational committees. The Society of Teachers of Family Medicine recently authorized the formation of Working Group on Home/ Hospice Care. The goals of this
4) Even though faculty are involved in hospice care in nearly a third of programs, only 17 percent of programs use a hospice rotation for training.
The American Journal of Hospice & Palliative Care May/June 1992
Downloaded from ajh.sagepub.com at UNIVERSITE DE MONTREAL on June 22, 2015
4. Wanzer SH, et al: The physicians responsibility toward hopelessly ill patients. NEJM, 1989;320:844-849
Working Group include: 1) Developing a repository for pooling of information and resources.
5. Rhymes J: Hospice care in America. JAMA,
1990 ;264-369-372
2) Identifying and developing a formal network of individuals in family medicine education involved in home/hospice care.
6. Bulkin W, Lukashok H: Rx for dying: The case for hospice. NEJM, 1988;318:376-378
3) Reviewing and evaluating existing curricular materials.
8. Cohen RE, et al: Attitudes toward cancer. Cancer, 1982;6:12l8- 1223
4) Developing a liaison with other specialty societies and groups (such as the Academy of Hospice Physicians, American Academy of Home Care Physicians, The STFM Task Force on Geriatrics Education, and the Society of General Internal Medicine).
9. Jordan TJ: A comparison of levels of anxiety of medical students and graduate counselors about death. 10. BleekerJAC, Pomerantz HB: The influence of a lecture course in loss and grief on medical students: an empirical study of attitude formation. Medical Education, 1979;l3:1l7-l28
5) Identifying funding sources for research in home/hospice care.
12. Cassileth BR: Medical studentsreactions to a hospice preceptorship. J Cancer Ed, 1989;4:261-263
6) Defining and developing specific competencies required to care for individuals at home, or who are terminally ill.
13. Davis G, Jessen A: Anexperiment in death education: medical students andclergy “oncall” together. Omega, 1980;1l:157-165
7. Kitchen AD: Second-year medical students’ experiences with death among their families and friends. J Med Educ, l989;61:760- 761
11. Dickinson G: Changes in death education in US medical schools 1975-1985. J Med Educ, l985;60:942-943
14. Richards Al, Schmale AR: Psychosocial conferences in medical oncology. Role in a training program. Ann mt Med 1974;80:541-5
7) Identifying and distributing the varied insurance regulations and changes regarding home/hospice care reimbursement.
15. Hillier R: Palliative medicine. BMJ, 1988;297-874-5 16. Hansen JP, et al: Treat or refer: patient’s interest in family physician involvement in their psychosocial problems. J Fam Prac 1987;24:499-503
F) Disseminating curricular materials, particularly related to spiritual assessment, insurance regulations and bereavement care. D
17. Berman 5, VifiarrealS: Use ofseminar as an aid in helping interns care for dying childrenand their families. Clinical Pediatrics 1983;22: 175179
References
18. Forster LE, Lynn J: Predicting life span for applicants to inpatient hospice. Arch ofInt Med 1988;148:1586-1591
1. Callahan D: What kind of life. Simon and Schuster, New York, 1990:146
19. Parkes CM: Accuracy of predictions of survival in laterstages ofcancer. BMJ, l982;2:29-3 1
2. Lukashok H: Hospice care under Medicare — an early look. Presented atthe International Conference on Health Policy, Jerusalem, June 7-12, 1987
DOES YOUR LIBRARY SUB SCRIBE to the
American Journal of Hospice & Palliative CareTM
If not, ask for a complimentary copy for your librarian and/or library committee
American Journal of Hospice
& Palliative Care Boston Post Road Weston, MA 02193
470
617/899-2702
Fax: 617/899-4361
3. Marcano J: Are physicians referring their patients to hospice care? Hospice Update, 1990;4:8-9
The American Journal of Hospice & Palliative Care May/June 1992
Downloaded from ajh.sagepub.com at UNIVERSITE DE MONTREAL on June 22, 2015
35
