America s population demographics continue

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1 Teaching End-of-Life Issues: Survey of U.S. Dental Schools and Dentists Karen L. Sirmons, B.S.; George E. Dickinson, Ph.D.; Tracy L. Burkett, Ph.D. Abstract: The aim of this research endeavor was to survey the teaching of end-of-life issues in the curriculum of U.S. dental schools (N=58) and to ascertain changes in education compared to a 1989 study of dental schools. In addition, the aim was to survey practicing dentists in South Carolina (N=400) regarding end-of-life issues. Response rates were 90 percent and 81 percent, respectively. Findings indicated that dental schools today are placing more emphasis on end-of-life issues than twenty years ago. Yet the majority of dentists agreed that more emphasis should be placed on communication skills with patients on end-of-life issues. Moreover, the overwhelming majority of dentists felt that dental school did not prepare them to relate to patients on endof-life issues. Dentists in general give support to families of deceased patients by sending a card or flowers, attending the funeral, or in some way making personal contact with the family. Perhaps as little as one or two lectures in dental school on dying, death, and bereavement could enhance a dentist s effectiveness in coping with end-of-life issues. Ms. Sirmons recently graduated with a bachelor s degree in sociology; Dr. Dickinson is Professor of Sociology, Department of Sociology and Anthropology; and Dr. Burkett is Associate Professor of Sociology, Department of Sociology and Anthropology all at the College of Charleston. Direct correspondence and requests for reprints to Dr. George E. Dickinson, Department of Sociology and Anthropology, College of Charleston, 66 George Street, Charleston, SC 29424; phone; fax; dickinsong@cofc.edu. Keywords: dental curriculum, end-of-life issues Submitted for publication 5/26/09; accepted 9/2/09 America s population demographics continue to be under a major shift. Baby boomers are aging and, as advancements in technology increase, people are living longer than ever before. For doctors, the number of geriatric specialists is growing exponentially. It is expected that doctors and nurses are accustomed and experienced in dealing with dying, death, and bereavement. In addition, they are becoming more informed on how to deal with a population nearing death. Dentists, however, are often left without much education on end-of-life issues. With the rate of medical advancements extending life, dentists will continue to encounter more elderly patients who may be suffering from a long-term illness, often terminal. 1 What role do dental schools play in preparing dentists to relate to their changing patient base? Dental schools were surveyed in to ascertain whether dying, death, and bereavement were included in their curriculum and, if so, to what extent. Eightyseven percent of these schools did not have any sort of formal end-of-life education, yet 30 percent were considering adding the topic to their program. To rectify this problem, in 1988 the Sections on Behavioral Sciences and Geriatric Dentistry of the American Dental Education Association (ADEA) recommended that the concepts of death and dying and the grieving process be included in the dental school curriculum. 3 This lack of education may create stress for dentists when dealing with end-of-life situations. For this reason, dentists in multiple surveys 4,5 thought that dying, death, and bereavement education needed to be added to the curriculum of dental schools. In the six-year difference between these two surveys (1989 to 1995), there is already an indication that the mean number of patients who die in a year is increasing. 6 The support dentists provide following a patient s death includes sending a sympathy card, attending the service or wake, and talking to the family at the home or during their next appointment. In addition, simple measures are taken such as removing the patient from the recall list and prompting office staff to not ask the family about the deceased patient. 7 This simple act of reaching out when a family loses a member reassures the family that they are cared for and that the dentist wants to provide support. The need for death education has also been requested by many practicing dentists. Since most dentists previously did not have any form of death education, they must rely on their own experiences with dying, death, and bereavement when dealing with a terminally ill patient and the patient s family. This is not the most reliable source as most people experience emotions differently and handle this stressful situation in multiple ways. Many schools in the earlier studies 2,4 indicated that they intended to include end-of-life education in the near future. With the increase in the January 2010 Journal of Dental Education 43

2 number of elderly patients who have retained their own teeth and the increase in illnesses like HIV/AIDS, dealing with chronically and terminally ill patients will become a common occurrence, especially for general dentists. Therefore, the aim of this research was to determine the teaching of end-of-life issues in U.S. dental schools and to compare the current end-of-life curriculum with a 1989 study 2 of dental schools. In addition, the authors surveyed practicing dentists in South Carolina regarding end-of-life issues. Methods Dentists To assess the perceptions and opinions of dentists, a survey was mailed that focused on their education and practice of dealing with end-of-life issues. The questionnaire was developed by the researchers based on previous surveys. 1,4,8,9 The survey was administered to a random sample of 400 dentists in the state of South Carolina, out of a total of 1,900 dentists. The sample was obtained from the Office of Research and Statistics in the Health and Demographics Department in Columbia, South Carolina. Before mailing the survey, we sought feedback from dentists and dental students. This feedback was not from a random sample but rather from dentists and dental students we knew, thus perhaps a biased sample. Nonetheless, the feedback was most helpful in constructing the questionnaire. The first survey was mailed in November of 2008, along with a self-addressed, stamped envelope. Two mailings to nonrespondents followed over the next several weeks. The study was approved by the Institutional Review Board (IRB) at the College of Charleston. The survey had a total of ten questions: dental school attended, year of graduation, specialty field of dentistry, gender, number of patients who die in a given year, whether or not dentists provide support, their orientation on end-of-life issues, whether they felt their dental education prepared them for dealing with terminally ill patients, if more emphasis should be placed on end-of-life issues in dental school, and where dying, death, and bereavement socialization should occur. Dental Schools The second component of this research was to survey the fifty-eight dental schools in the United States to update previous research on dental school end-of-life offerings. The survey was adapted and modified from previous studies. 2,8,9 We obtained addresses for the dental school deans from ADEA s Official Guide to Dental Schools The survey, accompanied by a cover letter and self-addressed, stamped envelope, was mailed in late fall of 2008, with three follow-up mailings to nonrespondents into the spring of The questionnaire had a total of seven questions: the extent of dying, death and bereavement in the curriculum, hours spent on the issue, topics covered in their offerings, teaching methods used, and background of instructors. Respondents were asked where this topic should be taught, and if the schools plan to incorporate end-of-life issues into their curriculum in the future. Results Dentists Of the 400 surveys sent to dentists in South Carolina, five were returned due to incorrect addresses, and one was returned indicating the dentist s death. Overall, we had a response rate of 81 percent (n=319). The returned surveys were comprised of 78 percent males, very close to the 82 percent documented by the Office of Research and Statistics for the state of South Carolina. Year of graduation ranged from 1954 to 2008; median year was The overwhelming number of dentists responding were in the field of general dentistry (76 percent), followed by orthodontics (6 percent), pediatrics (5 percent), oral surgery (5 percent), periodontics (4 percent), endodontics (2 percent), and prosthodontics and restorative (<1 percent). Sixty-six percent of respondents received their dental degrees from the Medical University of South Carolina. Overall, there were thirty-four dental schools represented. Seventy-eight percent of respondents strongly disagreed/disagreed with the statement that dental school well prepared them for relating to patients dealing with end-of-life issues. The remaining responses were 16 percent neutral and 5 percent agreed, with only one individual noting strongly agreed. When asked if dental schools should place more emphasis on communication skills with patients dealing with end-of-life issues, 58 percent of dentists strongly agreed/agreed, 29 percent were neutral, and 13 percent disagreed/strongly disagreed. 44 Journal of Dental Education Volume 74, Number 1

3 Dentists were asked the source(s) of their socialization for dealing with dying, death, and bereavement (see Table 1). Only 11 percent said their source was dental school. The majority said religious training (54 percent), while experience in the field (36 percent) and outside readings/research (30 percent) made up close to one-third each. On the other hand, when asked where dying, death, and bereavement should be taught, over 50 percent of the respondents said religious instruction, continuing education classes, and dental school (see Table 1). Dentists were asked approximately how many of their patients die in a year. The average was 8.4. When dentists were asked if they provided any type of support when a patient dies, 82 percent said yes and 17 percent said no. The most popular form of support to a family, following the death of a patient, was to send a card to the family (see Table 2). Results regarding year of graduation from dental school showed that older dentists (those who graduated up through 1985) were more likely to attend the funeral service (77 percent) for their patients than those graduating after 1985 (53 percent). Likewise, 75 percent of early graduates (up through 1985) and 53 percent of later graduates (after 1985) talked with the family of the deceased patient via a phone call or a personal visit. Thus, these earlier graduates (prior to 1986) tended to have more personal contact with patients families. On the other hand, the more recent dental graduates (graduated after 1985) were more likely to send a card or flowers (no personal interaction). Dental Schools Fifty-two out of the fifty-eight dental schools (90 percent) returned the survey. The number of dental schools not addressing the topics of dying, death, and bereavement was twenty-two (42 percent). Of those schools offering something on the topic in 2009, twenty-nine have 1 or 2 lectures, and in one, the offering forms a module of a larger course. Teaching method most frequently used is the lecture (twenty-four schools), followed by seminar/small Table 1. Actual training on dying, death, and bereavement (ddb) versus where ddb should be taught, by percentage of total respondents (N=317) Sources Actual Training on DDB Where DDB Training Should Occur Dental school Outside readings/research Experience in the field Continuing education classes 4 53 Religious instruction Other, please specify: 30 9 Personal experiences 12 Daily living 7 2 Family upbringing 4 1 Nondental formal education 3 <1 Table 2. Type of support provided when a patient dies, by percentage of total respondents (N=279) Graduated Graduated Type of Support All Dentists Sent a card Sent flowers Attended the funeral/viewing/wake Communicated with family Phone call Personal visit Note: Under the other, please specify category, a few respondents noted that they send a memorial contribution (five), talk to the family at the next office visit (three), or send food (<1). January 2010 Journal of Dental Education 45

4 group discussion (nine), with less than three schools using role-play, videos, or visits to a nursing home or hospice. As might be expected, the professional background of the instructor(s) is most often a dentist (thirteen), followed by psychologists (nine), social workers (five), physicians (five), nurses (three), and a lawyer/ethicist. Most frequent topics covered in the curriculum (<30 percent of schools) included psychological aspects of dying, grief and bereavement, attitudes toward death and dying, and communication with dying patients (see Table 3). The average amount of time spent on death education in the curriculum was 1.76 hours. The dental school response to dying, death, and bereavement as an important topic that should be included in dental school was twenty-six yes and twelve no. Those answering no were then asked where the topic should be taught. The sometimes multiple answers were continuing education (seven), outside reading/research (six), and individual religious training (three). The question was asked, If you do not currently have offerings on coping with dying, death, and bereavement in your curriculum, do you plan to do so in the future? The majority of those answering said no (fifteen), while five said yes. The most frequent reason for not planning to have such an offering in the future was no time to do this, though one respondent said not of interest to students. Discussion From these data, it appears that the ADEA Sections 1988 recommendation of including the concepts of death and dying and the grieving process in the dental school curriculum is being followed. The number of schools addressing these topics has increased from 13 percent in to 58 percent in In 1989, 2 the 30 percent considering death and dying in the curriculum must have done so, in addition to others. This is considerably less, however, than the 100 percent of medical schools and 99 percent of nursing schools that include something on end-of-life topics in the curriculum. 11 But then, one could ask if it is a role of dental schools to offer dying, death, and bereavement, as dentists are not on the front line of death scenes as are physicians and nurses. The dental school s role is perhaps limited, compared with medical and nursing schools, but dentists must still interact with dying patients and their families. Some preparation in dental school could help with communication with these situations, and most likely would not hurt. The lecture format is popular in presenting endof-life issues. As previously noted that a few dental schools have these already, reflective experiences integrated into the lecture format might prove to be useful and make the students more comfortable in communicating with the dying and their families. For example, a terminally ill patient could address students, or students might be assigned to visit a patient with a terminal illness, for instance, in a hospice program. Or simulated patients could be brought into the classroom, in addition to role-playing and audiovisuals, all with the idea of reducing stress and improving communication skills. Such experiences currently augment the lecture format in both U.S. and U.K. medical schools, moreso in the U.K. than the U.S. 12,13 The inclusion of some of these activities could complement the lecture format and be integrated into the dental curriculum if only for a few hours. Fifty-eight percent of South Carolina dentists agreed that dental schools should place more emphasis on communication skills with patients dealing with end-of-life issues, similar to the 61 percent in a Canadian study in in which dentists said Table 3. Topics covered in dental school curriculum, by percentage of total schools responding (N=52) Topics Covered Percentage Psychological aspects of dying (e.g., anxiety, depression) 29 Grief and bereavement 25 Attitudes toward death and dying 25 Communication with dying patients 21 Communication with family members of dying patients 17 Social contexts of dying (e.g., family care) 15 The experience of dying (e.g., pain) 10 End of life hydration and nutrition 8 Religious and cultural aspects of dying 6 46 Journal of Dental Education Volume 74, Number 1

5 bereavement education should be included in dental schools. Yet, fifteen of the twenty-two U.S. dental schools in 2009 not currently offering dying, death, and bereavement in their curriculum have no plans to do so in the future. As noted earlier, more dental schools are offering something on dying, death, and bereavement today, compared to some two decades ago, yet the average number of hours devoted to the topic remains unchanged (1.7 hours, as reported in vs in 2009). Several practicing dentists responses indicate that one to two hours of lecture on dying, death, and bereavement are enough. Results of the dental school survey suggest there is room for improvement regarding end-oflife offerings. Many schools are not fulfilling the desire of dentists, at least according to these data, to educate students who will soon be practicing dentistry. Dentists themselves felt dental school did not prepare them for dealing with end-of-life situations and wanted more emphasis on communication with terminally ill patients and their families. This desire for more emphasis on communication supports earlier findings 5 that the most stressful aspect of a patient s death is talking to the family and discussing a terminal condition with a patient. These findings run counter to the dental school respondent who said dying, death, and bereavement was not of interest to students, though this was the opinion of only one respondent. Several dentists, however, indicated that compassion is not a subject that can be taught, but must come from within. For example, one dentist said, I m not sure you can actually teach someone to be a caring person. But dentists will learn that, as they age, so will their patients. As one dentist expressed, I am 67. Many of my patients are older. When I started practice, I did not think much about their dying. It is now a reality weekly. The earlier dental school graduates (up through 1985) are mostly men (90 percent) and provide support more frequently. Older dentists likely have had more experience with death. Such experience should lead to more familiarity, perhaps making them more supportive and comfortable with dying, death and bereavement. As these dentists indicated a lack of exposure to dying, death, and bereavement in dental school, other experiences apparently serve as their socialization agents. When dentists were asked the source of their dying, death, and bereavement socialization, religion (54 percent), experience in the field (36 percent), outside readings (30 percent), and dental school (11 percent) were the most frequently given answers. A similar study in Canada in revealed that 24 percent gave religious training as their source of bereavement education, followed by individual reading (16 percent) and dental school (3 percent). Yet, when the current U.S. study asked what should be the source, religious training (58 percent), continuing education classes (53 percent), and dental school (53 percent) were the primary choices. The Canadian study asked where bereavement education should occur: dental school was the choice of most (85 percent), followed very distantly by religious training (10 percent) and continuing education (2 percent). The what is and what ought to be are not one and the same. Religious training came out first regarding the source on both the U.S. and Canadian surveys, yet when asked what ought to be the source, dental school was the choice of over half of the dentists in both studies. In reality, however, dental school education was the source in only 3 percent and 11 percent of responses in Canada and the U.S., respectively. The 11 percent saying their actual training in death education came from dental school in this 2009 South Carolina study, however, is more than the 5 percent reported in Oregon 9 some two decades ago. With limited formal socialization on end-of-life issues, dentists rely on other experiences or use the trial and error method. One dentist put it succinctly when he said, No real training I just wing it. As dental schools are offering limited preparation for students, dentists are forced to rely on their own experiences with death and their religious teaching as their background on how to relate to dying patients and their families. While this article is not suggesting that this orientation to end-of-life issues is bad, some information integrated into the dental curriculum could enhance the dentists experiences in dealing with end-of-life issues and hopefully help to reduce stress. And what about the dentist who does not have experiences and/or religious training to assist him or her on this topic? One dentist put it bluntly when he said, We can learn from each other, as most of this is common sense. But then, what about the individual who has no/limited common sense? Even if one buys into the argument that emotions and how to relate to others cannot be taught, there should be much for dentists to gain by being instructed on what is appropriate when dealing with patients near the end of their lives and how to comfort the family from a professional standpoint. Dentists, both in the Canadian study 1 and the current one in the United States, tend to be very January 2010 Journal of Dental Education 47

6 supportive of patients families following a death. As earlier research notes, 9 dentists often provide some level of contact with survivors and do so more often than many nondental health care providers. The overwhelming majority of dentists responding to our survey noted that they provide support when a patient dies, primarily through sending a card (90 percent) or flowers (58 percent), attending a service (67 percent), or talking with the families (phone call, 40 percent; personal visit, 32 percent). Yet, the earlier graduates (prior to 1986) were more likely to support the family via personal contact (attending a ceremony or talking with or visiting) than the more recent graduates (after 1985). In the Canadian study, 1 dentists support was evident in sending a card (79 percent) or flowers (35 percent), attending a service (23 percent), or talking with the family through a visit or telephone call (12 percent). One thing for sure, in the age of technological innovations regarding dentists support of families of deceased patients, is that has not been a viable choice. Less than 3 percent of dentists contact in this way. may be too impersonal for such a sensitive situation as a death in the family, though newspaper obituaries often encourage responses to the family in this way. Perhaps the salient observation overall regarding dental support for the family of deceased patients is not so much the type of support dentists give, rather the fact that they give support. As noted earlier, the simple act of reaching out reassures the family that they are cared for and that the dentist wants to provide support. The average number of dentists patients deaths per year in our study was 8.4. This is slightly higher than the average of five deaths per year in Oregon in and seven per year in Kentucky in From these three averages, though in different states in the United States, the number of patient deaths is gradually increasing over time. Such a trend suggests that the dental profession today has a greater need to better prepare its graduates to deal with these end-of-life situations. Educators recognize that death anxiety and personal attitudes related to end-of-life issues are shaped during students initial educational programs. 14 Dental schools, therefore, have a golden opportunity to help students sort out their own feelings toward end-of-life issues. It is important that students think about their own values and beliefs and understanding of dying before they can be caring and insightful to terminally ill individuals and their families. Limitations This study has several limitations. Two-thirds of these dentists graduated from the Medical University of South Carolina s College of Dentistry; thus, the results might not be representative of other states and regions. Additionally, the data were selfreported, which could produce errors. The dental school survey was addressed to the dean, yet it is not known in most cases who actually completed it. Not just anyone in a professional school would necessarily know the curriculum offerings well in their school. Questions with cafeteria-type answers gave other, please specify as an option. A future similar study might wish to include some of these other responses, as respondents are more likely to check off what are given as choices, rather than take the time to name other responses. For example, the question about type of support given with the option of other, please specify had 4 percent of respondents writing in that they talk to the family at the next office visit following the death. Inquiries regarding grief support following the death of a patient did not ask about the frequency of such behavior, only if the dentist offers support and what type of support had been given over the years. Thus, if a dentist sent a card on only one occasion over several years, then he or she could check that option of support. He or she in fact sent a card. Some dentists noted that their support often depended on how well they knew the deceased patient and family. Future studies might determine how often grief support is given, rather than the simple query of whether or not one gives support. Future research could also benefit from interviews to actually obtain a description of how dentists dealings with dying, death, and bereavement mature over the years of experience gained through employment. It could be useful to survey dental school students to determine their opinions about the issues, as most students are probably worried about learning the curriculum rather than applying what is learned to real life. Many dental students may not even think about needing to relate to a dying patient in the future or what he or she will do to communicate with the family of that individual. Additionally, a survey of families of patients with terminal illnesses to determine if they see a void in dental clinician communication could be useful for future dental school curriculum planning. 48 Journal of Dental Education Volume 74, Number 1

7 REFERENCES 1. Klieb HB, Wisema M. Death, dying, and bereavement: a survey of dental practitioners. Spec Care Dent 2008;28: Dickinson GE, Sumner ED. Update on death education in U.S. dental schools. J Dent Educ 1989;53(10): Draft curricula guidelines in geriatric dentistry. Washington, DC: American Dental Education Association, Tolle SW, Chiodo GT. The need for death education in the dental curriculum. J Dent Educ 1989;53(3): Henry RG, Johnson HA, Holly MM, Kaplan AL. Response to patients death and bereavement in dental practices. Spec Care Dent 1995;15: Johnson HA, Henry RG. Death, dying, and bereavement education in dental schools. J Dent Educ 1996;60(6): Chiodo GT, Tolle SW. The dentist s role in bereavement support. Gen Dent 2000;48: Dickinson GE, Clark D, Sque M. Palliative care and endof-life issues in UK pre-registration undergraduate nursing programs. Nurs Educ Today 2008;28: Chiodo GT, Tolle SW. Patient death and bereavement: what is the dentist s role? Spec Care Dent 1988;8: ADEA official guide to dental schools. Washington, DC: American Dental Education Association, Dickinson GE. End-of-life and palliative care issues in medical and nursing schools in the United States. Death Stud 2007;31: Field D, Wee B. Preparation for palliative care: teaching about death, dying and bereavement in UK medical schools Med Educ 2002;36: Dickinson GE, Field D. Teaching end-of-life issues: current status in United Kingdom and United States medical schools. Am J Hosp Palliat Care 2002;19: Kirchoff K, Beckstrand R, Anumandla P. Analysis of endof-life content in critical care nursing textbooks. J Prof Nurs 2003;19: January 2010 Journal of Dental Education 49