Pediatric Residents‘ Clinical and Educational Experiences With End-of-Life Care
【摘要】 OBJECTIVE. The objective of this study was to document the frequency of pediatric resident experiences with end-of-life care for children and the educational context for these experiences, as well as to determine whether residents deem their preparatory training adequate.
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METHODS. An Internet-based survey was distributed to all categorical pediatric residents at the Johns Hopkins Children's Center. Survey items asked residents to (1) quantify their experiences with specific responsibilities associated with the death of a pediatric patient, (2) identify their educational experiences, and (3) respond to Likert scale statements of, "I feel adequately trained to... ." The responsibilities were discussion of withdrawal/limitation of life-sustaining therapy, symptom management, declaration of death, discussion of autopsy, completion of a death certificate, seeking self-support, and follow-up with families.
RESULTS. Forty (50%) of 80 residents completed the survey. Residents had been present for a mean (± SD) of 4.7 (± 3.0) patient deaths. More than 50% of residents had participated in discussions of withdrawal/limitation of life-sustaining therapy, symptom management, completing a death certificate, and seeking personal support; however, <50% of residents had been taught how to hold discussions of withdrawal/limitation of life-sustaining therapy, declare death, discuss autopsy, complete a death certificate, and have follow-up with families. Residents did not feel adequately trained in any of these areas.
CONCLUSION. Pediatric residents have limited experience with pediatric end-of-life care and highly varied educational experiences and do not feel adequately trained to fulfill the responsibilities associated with providing end-of-life care for children. Overall, this perception does not improve with increased level of training. This study identifies several target areas for curricular intervention that may ultimately improve the end-of-life experience for our pediatric patients and their families and the young physicians who care for them.
【关键词】 end of life medical education palliative care resident education/training
Fifty-four thousand infants and children die in the United States each year, and the overwhelming majority die in a hospital setting.1 Recently, much work has been done to improve pediatric palliative and end-of-life care. National organizations such as the American Academy of Pediatrics have published practice guidelines.2 The Institute of Medicine published its powerful report entitled "When Children Die: Improving Palliative Care and End-of-Life Care for Children and Their Families."3 The National Association of Children's Hospitals and Related Institutions launched pilot projects in several major children's hospitals, and the Initiative for Pediatric Palliative Care developed a multidisciplinary pediatric palliative care curriculum.4,5 These admirable efforts represent major steps in delivering better care to dying children and their families; however, the primary focus has been on educating care providers who have already established their professional identities. In this study, we sought to provide a clearer picture of how pediatric residents experience patient death from a clinical, educational, and personal point of view.
Large knowledge gaps remain regarding what pediatric residents currently experience in caring for dying children and how best to educate them to provide skilled and compassionate care to their patients. Filling in these gaps is essential for training future general and subspecialty pediatricians. What is known is that current educational processes do not satisfy the expectations of families or residents themselves. Parents have reported dissatisfaction with various aspects of palliative and end-of-life care for their children, including pain control, symptom management, and team communication.6–8 Pediatric residents report that the deaths of their patients are among the most difficult and distressing experiences of their training, and they do not feel competent or comfortable providing palliative care to children.9–12 There is, however, a paucity of information on the quantity of experiences that pediatric residents have with death of pediatric patients. The objectives of this study were to document the frequency of pediatric resident experiences with pediatric end-of-life care and the educational context for these experiences and to determine whether residents deem their preparatory training adequate.
METHODS
An anonymous, 48-item, cross-sectional survey was distributed to the 80 categorical pediatric residents at the Johns Hopkins Children's Center via commercial Web-based software. The underlying framework for the survey was developed through review of the medical literature on pediatric palliative and end-of-life care and pediatric resident education.2,3,10,13–17
Residents were asked to quantify the number of times they had participated in particular responsibilities related to the dying process: presence at a patient's death, discussion of withdrawal or limitation of life-sustaining therapy, providing symptom management, declaring a patient dead, discussing the option of autopsy, and completing a death certificate. In addition, residents were asked to report on seeking support for themselves or having follow-up contact with families after patient deaths. For each end-of-life–related responsibility, residents were asked whether they had received instruction in that area, at which level of training the instruction occurred, and the format of the instruction. Residents were then asked to score their responses to statements of, "I feel adequately trained to... ." The scoring scale was as follows: 1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree, and 5 = strongly agree.
Six pediatric critical care physicians and 3 general pediatricians initially reviewed the survey for content and readability. A pilot version was distributed to third-year residents at a New England tertiary care center via US mail in August 2005. Results of the pilot survey were used to refine the current survey instrument in terms of clarity, parallel construction, and response distribution.18
Survey distribution occurred from February through April 2006. Participants were contacted by an e-mail explaining the study and containing a link to the survey site. Follow-up e-mails were sent every 2 weeks for 8 weeks to nonresponders. Participation was voluntary, and responses were anonymous. The Johns Hopkins Medical Institutions institutional review board approved the study.
At the time of distribution, postgraduate year 2 (PGY2) residents had attended a 1-day retreat focused on sharing bad news and the personal and professional aspects of death in January 2006. The PGY3 residents had attended the same retreat 1-year earlier. Approximately 6 residents per year are unable to attend because of vacations or away electives. Table 1 shows the residency clinical rotation schedule. The pediatric resident curriculum includes six 1-hour noon lectures on pediatric palliative and end-of-life care and 1 grand rounds session per year. Topics covered in the noon lecture series include introduction to palliative care, hospice and care at time of death, spiritual issues in palliative care, session with bereaved parents, grief and bereavement, and pain and symptom management. Residents who are on inpatient rotations (excluding NICU, PICU, and emergency department) are expected but not required to attend these lectures.
TABLE 1 Pediatric Resident Curriculum at Johns Hopkins Children's Center
Survey results were downloaded to Microsoft Excel and analyzed by using SPSS 14 (SPSS, Chicago, IL). Likert responses were converted to ordinal numbers (1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree, and 5 = strongly agree). As appropriate, means, SD, and percentage of respondents were reported. For the primary outcome measure, number of deaths for which a resident was present, the mean value for each level of training was compared through analysis of variance. Mean values for level of training were similarly compared for the secondary outcome measures of discussing withdrawal or limitation of life-sustaining therapy, providing symptom management to a child at the end of life, declaring a patient dead, discussing the option of autopsy with a patient's family, completing a death certificate, and having follow-up contact with a patient's family after death. Categorical variables were compared using 2 test or Fisher's exact test to determine whether clinical or educational experiences were associated with increased perceived competency. For this analysis, the Likert responses were collapsed as follows: 4 and 5 = agree; 1, 2, and 3 = disagree.
RESULTS
Fifty percent (40 of 80) of residents completed the survey. An additional 10 residents responded but either declined to participate or did not complete the survey. The response rates by training level were as follows: 35% for PGY1 (9 of 26), 52% for PGY2 (14 of 27), and 63% for PGY3 (17 of 27). The average age (± SD) was 29.1 years (± 2.7). Although respondents differed from nonrespondents by gender (40% of respondents were male versus 20% of nonrespondents), there were not significant differences in age or level of training.
Residents reported caring for a mean of 4.7 (± 3.0; range: 0–13) children at the time of death, which increased significantly with postgraduate year (P < .001). The majority of the deaths occurred in the NICU and the PICU, with no resident reporting being present for a death in a clinic or an office setting, outpatient hospice program, or a patient's home (Fig 1).
FIGURE 1 Number of patient deaths according to location and PGY. a PGY1 residents do not rotate in the PICU.
Discussing Withdrawal or Limitation of Life-Sustaining Therapies
Residents reported being present for an average of 3.5 (± 3.7) discussions, and 3 residents had not been present for any (Table 2). Only 1 discussion each was reported in the clinic/office setting or the emergency department. Eighty percent (32 of 40) of residents had been present for a discussion in the NICU, 87% had been present in the PICU (27 of 31, excluding PGY1 residents, who do not rotate there), and 30% had been present on an inpatient floor. When asked about their role in these discussions, 4 residents reported leading 1 discussion each. Of the remainder, 33% (13 of 40) had observed but not participated in the discussion, and 60% (24 of 40) had participated. Residents endorsed the statement, "Limitation of life-sustaining therapy is ethical in pediatric patients," with a mean Likert score of 4.6 (± 0.5) and, "Withdrawal of life-sustaining therapy is ethical in pediatric patients," with a mean Likert score of 4.6 (± 0.7).
TABLE 2 Quantity of Resident Experiences With Patient Death by PGY
Forty-five percent (18 of 40) of residents reported receiving instruction on conducting a discussion of withdrawing or limiting life-sustaining therapy. All had received instruction during both medical school and residency; however, residents did not agree with the statement, "I feel adequately trained to discuss limitation or withdrawal of life-sustaining therapy with pediatric patients and their families." The mean response was 2.4 (± 0.7), with an increase in agreement by year of training (P = .05; Table 3).
TABLE 3 Resident Experience, Education, and Assessment of Training Adequacy
Providing Symptom Management at the End of Life
Eighty-five percent (34 of 40) of residents reported providing symptom management at the end of a patient's life during their residency. The mean number of patients for whom residents provided symptom management was 4.1 (± 3.8), with a trend toward increase in experience with each level of training (Table 2). Fifty-three percent (21 of 40) of residents reported instruction on symptoms to expect at the end of life and their management, 10% (4 of 40) in medical school only, 20% (8 in 40) in residency only, and the remaining 23% (9 of 40) during both (Table 3). Lecture was the most frequently reported type of instruction in medical school (10 of 13), and informal teaching at the time of event was the most frequently reported type of instruction for residency (13 of 17). Residents did not endorse the statement, "I feel adequately trained to provide symptom management to children at the end of life." The mean response was 2.4 (± 0.8), with no significant difference by year of training (Table 3).
Declaring Death
Thirty-five percent of residents (14 of 40) had declared a patient dead during their residency, with a mean of 0.6 (± 1.2) experiences and a trend toward increased experience with year of training (Table 2). Thirty-three percent (13 of 40) reported instruction on declaring a patient dead, 10% (4 of 40) in medical school only, 13% (5 of 40) in residency only, and 10% (4 of 40) in both (Table 3). Lecture was the most frequently reported type of instruction in medical school (6 of 8), and informal teaching at the time of event was most frequently reported in residency (8 of 9). Residents did not endorse the statement, "I feel adequately trained to declare a patient dead," with a mean response of 2.2 (± 0.8), which did not vary by year of training (Table 3).
Discussing Autopsy
No PGY1 respondent had discussed autopsy with a family. Although the percentage of residents who had performed this task increased from 29% of PGY2 residents to 59% of PGY3 residents (Table 3), the mean number of experiences was very small at 0.8 (± 1.6; Table 2). Eighty-six percent of PGY2 residents reported being taught to discuss autopsy with the families of their patients, and they came the closest to endorsing the statement, "I feel adequately trained to discuss the option of autopsy with families of pediatric patients," with a mean of 2.9 (± 1.1; Table 3). Eighteen residents reported instruction on discussing autopsy with families during residency, primarily in small group discussion. Three of these same residents also reported having this instruction by lecture in medical school.
Completing a Death Certificate
PGY1 residents reported no experiences with completing death certificates or being taught how to do so. Although 82% (14 of 40) of PGY3 residents reported completing a death certificate, the mean number completed was only 1.4 (± 1.6). Only 33% (13 of 40) of the total group reported being taught how to do this. One resident reported a lecture in medical school; the remainder cited informal teaching at the time of event during residency as their educational experience. Residents did not endorse the statement, "I feel adequately trained to complete a death certificate" (Table 3).
After a Patient's Death
Thirty-five percent of residents (14 of 40) had attended the funeral, wake, viewing, or memorial service of a patient. No PGY1 residents had done so. Sixty-five percent (26 of 40) of residents had been encouraged to attend a funeral, primarily by other residents (60%). Patients' families had provided encouragement to 36% of these residents, which was more than attending physicians (28%) or fellows (20%). Only 1 resident reported being discouraged from attending a funeral, and this was by an attending physician. Conflicting clinical responsibilities was the primary reason residents gave for not attending funerals (70%), followed by lack of information on time/place (46%) and questioning whether physician attendance was appropriate (20%). Despite this reported uncertainty, 95% of residents (38 of 40) stated that they would attend a patient's funeral in the future.
Thirty-five percent (14 of 40) of residents reported follow-up contact with families after the death of a patient. Again, none was a PGY1 resident. Eight residents reported this occurring as an unexpected meeting, and 2 residents reported it as a scheduled appointment. The remaining 4 reported contact via e-mail, telephone, or letter. Only 4 residents of the total group reported receiving instruction on having follow-up contact with families. Residents did not endorse the statement, "I feel adequately trained to have follow-up contact with the families of my patients who die" (mean: 2.6 [± 1.0]; Table 3).
Personal Responses to Patient Deaths
Residents strongly agreed with the statement, "I find it valuable to care for dying children" (mean: 4.4 [± 0.7]) and were neutral toward the statement, "I find it difficult to care for dying children" (mean: 3.3 [± 1.0]). All of the residents reported talking about the death of at least 1 patient after it occurred (Fig 2). These conversations occurred in a wide range of contexts, with 73% (29 of 40) having informal discussion with physicians, 68% (27 of 40) having formal team debriefings, 68% (27 of 40) having discussions with friends/family, and 30% (12 of 40) having conversations with the patient's family. Other venues included discussion with nurses, social workers, hospital or personal clergy, and a therapist/counselor. Residents endorsed the statement, "It is important to develop emotional resources to give me support when my patients die" (mean: 4.2 [± 0.6]).
FIGURE 2 Percentages of residents who reported self-care and follow-up experiences.
Experience Versus Education
Neither experience nor education had a statistically significant correlation with an increased assessment of the adequacy of training in any category. The sample size was too small to identify whether a particular educational format was associated with either positive or negative assessment of the adequacy of training.
DISCUSSION
This is the first study, to our knowledge, to quantify pediatric resident experience with specific end-of-life responsibilities. The results show that pediatric residents have both limited clinical experience with and highly variable educational exposures to end-of-life care in children. Our results also support the work of previous authors by showing that pediatric residents do care for children at the end of life but do not feel adequately trained to do so.6,9,10,12,19 In fact, residents did not agree with any statement of "feeling adequately trained" in our survey of end-of-life–related responsibilities.
The limited number of dying patients for whom our residents reported caring is different from a 1984 report of 35 patients who died during a pediatric resident's training.20 This difference may lie in changes in pediatric mortality rates or changes in resident exposure in the past 20 years. Our results are consistent with those of Kolarik et al,12 who reported a mean of 3.2 (± 4.2) patients who died while under a resident's care during training. We specified that residents report the number of times they were present for a patient's death rather than asking how many of the patients they cared for died. As 1 of our respondents commented, "I often hear of deaths of patients that I have recently taken care of but was not actually present at the time of death or at the discussion to withdraw support; therefore, although multiple patients I have cared for have died, these experiences have not contributed to my learning about end-of-life issues." More patients than in the past die at home with hospice services rather than in the hospital, additionally limiting resident exposure. The locations where residents did experience patient deaths are consistent with previously published data; the majority of deaths occurred in a NICU or PICU.21,22 That our residents spend 15% of their training in ICU settings may account for their lower exposure to patient deaths than in past reports. This time allocation reflects the current Accreditation Council for Graduate Medical Education Pediatric Residency Review Committee guidelines and therefore is representative of accredited US training programs.23 Given the recent limitations on ICU time and duty hours, there is a clear need to put educational interventions in the places where residents do care for patients at the end of life.
It is likely that this low exposure rate also contributes to the infrequency with which pediatric residents engage in basic death-related skills, such as declaring a patient dead and completing a death certificate. Although these are tasks that all physicians should be able to perform, residents declared a patient dead a mean of 1.1 times and completed a mean of 1.4 death certificates by PGY3. Of all the responsibilities queried in this survey, declaring a patient dead and completing a death certificate were the ones that pediatric residents felt least trained to do (Table 3). Perhaps more concerning is that only 33% of pediatric residents reported being taught how to do these tasks, and the majority of this education was informal teaching at the time of an event. Messite and Stellman24 reported the rarity of physician education on death certification and high frequency of inaccurate death certificate completion among internal medicine physicians. It is unlikely that the performance of this task by pediatricians will be significantly better than that of internists without targeted education. Many community pediatricians, much like adult primary care providers, are called into emergency departments and hospitals to pronounce their patients dead and complete the death certificate. Given that our public health system uses data culled from death certificates to make major decisions regarding allocation of health care resources, it is critical that our medical education system develop a way to provide accurate data.
Nearly all residents had been present for discussions of limiting or withdrawing life-sustaining therapies. This was the only area that showed a significant increase in number of experiences and improved perceived adequacy of training with advancing PGY. It is not surprising that 84% of these discussions occurred in ICU settings. ICU clinicians need to be keenly aware of and prepared for their role in educating residents regarding end-of-life discussions. Where and how residents have these conversations modeled is important in 2 ways: It influences their perception of the respective roles of pediatric subspecialists and primary care providers in establishing goals of care and how they integrate these conversations into their own practice patterns.
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One of the predominant themes in our results is the reliance on informal education to teach residents how to provide pediatric end-of-life care. Although the benefits of "just-in-time" education are that it immediately correlates with a learner's clinical experience and can take advantage of relatively rare events, it has limitations. The available educator may not be able to teach or model good care successfully. In addition, systematic assessment of both the teaching and the learning is more complicated because the events are unscheduled and participants are variable.
Our findings demonstrate several challenges that support an approach to teaching end-of-life care that spans the continuum of medical education. Medical students should learn basic concepts that apply to all or most medical fields, such as teamwork, clear and compassionate communication, principles of biomedical ethics, and tasks such as declaring a patient dead and completing a death certificate properly. Education during residency should focus on the elements that are important to general practitioners: continued communication skills development, ethical development, providing symptom management, and discussing prognosis and developing a plan of care in partnership with the patient and his or her family. During postresidency training or continuing education, the focus should be on refining already acquired skills and developing those specific to one's field, be it the withdrawal of mechanical ventilation in an ICU or the discussion of advance directives in the outpatient setting. Throughout all of these stages, providers should be offered opportunities that will help them understand their own emotional responses to patient death and mitigate any suffering that this may cause them.
This study has several limitations. First, it reflects the experiences of residents at a single institution. There were no incentives offered for survey completion, and the response rate was less than we had hoped and was more weighted with PGY2 and PGY3 residents. This is possibly an effect of using an Internet-based survey tool or the distribution during the late winter/early spring, which are busy times in residents' lives. It is also possible that the issues addressed in the study become more relevant to residents as they move through their training and have more experiences with end-of-life care. Responses were based on a recall period of up to 7 years and were therefore subject to the limitations of human memory. This study did not assess knowledge base or skill level with end-of-life responsibilities. We used the residents' assessment of the adequacy of their training as our end point because we hoped to identify target areas for educational interventions and to see improvements as residents moved through their training. Perhaps measuring clinical skill levels and knowledge of pediatric end-of-life care would reveal that residents are better trained than they think they are; if so, then we would still need to convey that to residents in a manner that addresses their concerns appropriately. Given that other authors have found that most families identify clear needs to improve end-of-life care for children, the discomfort of physicians-in-training needs to be remedied to provide the highest-quality care and compassion to patients and their families.6,8,25,26
The results of this study provide groundwork for the development of several types of studies that can further elucidate how best to educate pediatric residents in end-of-life care. A multi-institutional study would eliminate the bias of a single site and shed light on the experiences of residents in both smaller and community-based training programs. A prospective evaluation of resident experiences and skills at the time of patients' deaths, especially 1 that incorporates parent assessment of resident performance, would be particularly powerful. On the basis of these studies, curricular interventions both in the ICU setting and throughout pediatric residency training could be developed and assessed. We hope that these interventions will lead to demonstrable improvements in the knowledge base, skill level, and perceived adequacy of training of our residents regarding pediatric end-of-life care. This should lead to improved quality of care and patient and family satisfaction.
CONCLUSIONS
We quantified the number of children for whom pediatric residents care at the end of life and how often they perform specific end-of-life responsibilities. We found that pediatric residents do not feel adequately trained to provide this care to children and that educational experiences are highly variable. As future pediatric primary care and subspecialty physicians, residents need to develop basic competencies in these areas. Curricular interventions that target the range of skills required in end-of-life care need to be developed, implemented, and assessed to create sustainable improvement in the quality of care for patients and their families.
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