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Rabow MW, Hardie GE, Fair JM, McPhee SJ. End-of-Life Care Content in 50 Textbooks From Multiple Specialties. JAMA. 2000;283(6):771–778. doi:10.1001/jama.283.6.771
Author Affiliations: Division of General Internal Medicine (Drs Rabow and McPhee) and School of Nursing (Drs Hardie and Fair), University of California, San Francisco.
Context Prior reviews of small numbers of medical textbooks suggest that end-of-life
care is not well covered in textbooks. No broad study of end-of-life care
content analysis has been performed on textbooks across a wide range of medical,
pediatric, psychiatric, and surgical specialties.
Objective To determine the quantity and rate the adequacy of information on end-of-life
care in textbooks from multiple medical disciplines.
Design and Sources A 1998 review of 50 top-selling textbooks from multiple specialties
(cardiology, emergency medicine, family and primary care medicine, geriatrics,
infectious disease and acquired immunodeficiency syndrome [AIDS], internal
medicine, neurology, oncology and hematology, pediatrics, psychiatry, pulmonary
medicine, and surgery) for the presence and adequacy of content in 13 end-of-life
Main Outcome Measures Chapters on diseases commonly causing death and those devoted to end-of-life
care were identified, read, rated, and compared by textbook specialty, chapter,
and domain for the presence of helpful information in the 13 domains. Content
for each domain was rated as absent, minimally present, or helpful. Textbook
indexes were analyzed for the number of pages relevant to end-of-life care.
Results Overall, helpful information was provided in 24.1% (range, 8.7%-44.2%)
of the expected end-of-life content domains; in 19.1% (range, 6.2%-38.5%),
expected content received minimal attention; and in 56.9% (range, 23.1%-77.9%),
expected content was absent. As a group, the textbooks with the highest percentages
of absent content were in surgery (71.8%), infectious diseases and AIDS (70%),
and oncology and hematology (61.9%). Textbooks with the highest percentage
of helpful end-of-life care content were in family medicine (34.4%), geriatrics
(34.4%), and psychiatry (29.6%). In internal medicine textbooks, the content
domains with the greatest amount of helpful information were epidemiology
and natural history. Content domains covered least well were social, spiritual,
ethical, and family issues, as well as physician after-death responsibilities.
On average, textbook indexes cited 2% of their total pages as pertinent to
Conclusion Top-selling textbooks generally offered little helpful information on
caring for patients at the end of life. Most disease-oriented chapters had
no or minimal end-of-life care content. Specialty textbooks with information
about particular diseases often did not contain helpful information on caring
for patients dying from those diseases.
Many patients in the United States currently receive suboptimal care
at the end of life.1-3
Inadequate physician training likely contributes to both deficient care for
dying patients and increased anxiety for caring physicians.4-11
Medical education typically provides little training in care of the dying.12-15 Most
medical schools, residencies, and fellowships offer almost no formal training
in palliative care, the information taught is not well integrated into the
curricula, and the few courses available are generally elective.16
National medical licensing examinations have relatively few questions assessing
students' end-of-life care competence.17 In
general, students and physicians feel ill prepared to provide end-of-life
Textbooks serve as a cornerstone in the training of medical students
and residents, as authoritative references and reviews for more experienced
clinicians, and as an important feature of professional orthodoxy and culture.
Textbooks are central to clinical medicine, not only describing the expected
best practices but also codifying the principles and standards of clinical
care. Previous research suggests that the end-of-life content in internal
medicine, pediatrics, and nursing textbooks is limited.19
Carron et al20 reviewed 4 of the classic internal
medicine texts and found little helpful information on providing care to patients
at the end of life. Hill et al21 analyzed the
end-of-life care content in 5 major pediatric textbooks and found similar
deficiencies in the areas of symptom management, advance care planning and
communication. Ferrell et al22 have recently
documented limited end-of-life content in 50 nursing textbooks.
These results suggest that the environment for learning necessary skills
in end-of-life care is inadequate. Although generalist physicians and those
from nearly every specialty provide care for patients at the end of life,
a broad survey of a large number of general and specialty textbooks in the
disciplines of medicine, surgery, pediatrics, and psychiatry has not been
performed. To assess the end-of-life care content in a wider, more representative
range of textbooks, we undertook a detailed review of 50 leading medical textbooks,
analyzing the presence and utility of the end-of-life care information presented.
To assess the current status of end-of-life care content, 2 readers
reviewed in 1998 the most recent editions available for 50 best-selling medical
textbooks. We identified best-selling textbooks based on a widely used publishing
industry sales report, the Login Brothers Report for 1997.23
To ensure review of a wide spectrum of textbooks, we selected a variety of
general and specialty textbooks from a variety of publishers
(Table 1 ). Once we selected
the 50 textbooks, we requested review
copies from their publishers or purchased them.
The format for review included 13 domains of end-of-life content that
one might reasonably expect to find in medical textbooks. The domains chosen
were based on position statements from important national and international
Two national experts who had previously analyzed textbooks reviewed the domains
chosen.20,22 Furthermore, the
domains selected address all elements in the biopsychosocial model of health.29 The domains were epidemiology (vital statistics),
natural history (prognosis, time course, mode of death, and symptoms), pain
management, nonpain symptom management (dyspnea, nausea and vomiting, delirium,
and fatigue, among others), psychological issues (depression, anxiety, fear,
loneliness, and grief), social and demographic issues (interpersonal relationships
with spouses or partners, family, and friends; gender; race; and cultural
and economic issues), spiritual issues (abandonment, completion of tasks,
acceptance, religious tasks, and choices), family issues (communication of
patient and family member wishes, grief and bereavement, informal caregiver
role and support, education, and economic issues), definition of end-of-life
care (definition of death and goals of care), ethics, law, and policies (individual
vs organizational ethics, patients' self-determination, double effect, withdrawal,
and withholding of life support), physician after-death responsibilities (including
pronouncement, autopsy, and organ donation), physician roles (communication
with patient and family, personal grief, and bereavement), and context of
care (advance directives, options for end-of-life care, referral to hospice,
and funeral arrangements).
In each book, we reviewed textbook chapters that pertained to the most
common causes of death in the United States.30
Using the tables of contents of textbooks from a particular specialty, we
identified chapters for review that concerned disease entities or topics relevant
to end-of-life care in that specialty. For example, we reviewed chapters on
coronary artery disease in cardiology texts but not in neurology texts. Some
chapters selected for review overlapped multiple specialties (for example,
lung cancer was reviewed in pulmonary, oncology, family and primary care medicine,
and internal medicine texts), allowing comparisons across and between textbooks
in various specialties. The number of chapters reviewed in each textbook ranged
from a minimum of 4 chapters (psychiatry) to a maximum of 13 chapters (internal
Reviewers evaluated all textbooks within a specialty concurrently; for
example, all neurology textbooks were reviewed sequentially before moving
to the next specialty. Each textbook was rated by at least 1 reviewer. The
review process entailed copying the selected chapters, reading the entire
chapter, and highlighting content appropriate to each of the 13 domains. Following
a complete reading of each chapter, readers rated the marked content in each
domain using the following ratings: 0 for absent content; 1 for minimal content;
and 2 for helpful content and topic well discussed. Rating was done as liberally
as possible, with domains receiving a 1 for any mention of the topic or for
a cross-reference to content elsewhere in the text. Domains received a 2 for
providing any helpful information. For example, a chapter noting simply that
most oncologists believe that patients with cancer should be told about their
diagnosis would receive a rating of 1 for the communication domain. A rating
of 2 would be assigned if the chapter gave any further information about communication,
such as how to discuss a new diagnosis with patients, common barriers to communication,
or patient expectations for communication. This rating process was derived
from an earlier study of end-of-life care content in 4 internal medicine textbooks.19 The 2, 1, and 0 domain ratings were then entered
into a computerized database.
We also reviewed the table of contents of each text to identify chapters
specifically devoted to topics related to care for patients at the end of
life. Finally, we examined the index of each textbook for 18 key words concerning
end-of-life care issues (advance directives, autopsy, bereavement, brain death, death, death
certificate, do not resuscitate, double effect, dying, end
of life, family, grief, hospice, mortality, palliation, pronouncement, withdrawal, and withholding support). We selected
these particular key words because they directly reflected or were synonyms
for the domains under review. For each keyword, we entered into the database
the total number of pages with citations to that word and the total number
of pages in the textbook.
To determine interrater reliability for the 13 domains of end-of-life
care content, the 2 reviewers both rated 10% of the chapters. The chapters
read by both reviewers included the first textbook reviewed in each specialty
to ensure that each reader was scoring that specialty's texts similarly. If
discrepancies in scores were present, resolution was achieved by a consensus
of all 4 of the investigators.31 This process
standardized the reading of chapters for subsequent textbooks. The total observed
agreement of 97% between the 2 raters indicates a high degree of interrater
reliability. Adjudication was required for only 3% of the rater scores for
which there were disagreements.
We entered all ratings into a database prior to any data analysis. Given
the descriptive nature of this study, we limited our analyses to descriptive
statistics (averages) and frequency distributions. We used Microsoft Excel
1998 (mfr) for all data management and analysis.
For each chapter reviewed, each of the 13 end-of-life content domains
received a rating of 2, 1, or 0. We used these raw domain ratings to create
a content score for each chapter, textbook, and specialty. For each chapter,
we calculated the helpful, minimal, or absent content score as the percentage
of 2, 1, or 0 domain ratings across all 13 domains in a particular chapter.
For example, a chapter on stroke in a neurology textbook that received a rating
of 2 in 1 domain, 1 in 4 domains, and 0 in the other 8 domains would be described
as having a helpful content score of 7.7%, a minimal content score of 30.8%,
and an absent content score of 61.5%. We calculated the content score for
each textbook as the average of the content scores for all chapters reviewed
in that particular book. We calculated the content score for each specialty
as the average of the content scores for all textbooks reviewed in that particular
specialty. In addition, we calculated the overall averages of the helpful,
minimal, and absent content scores for all 50 textbooks reviewed. To evaluate
how various specialties compared in their coverage of a common chapter, we
calculated the average content scores for a particular chapter topic across
all texts in a given specialty.
Given the relatively small numbers of elements in each category of analysis,
content scores and their averages were not adjusted or weighted to account
for the amount of content (number of pages). However, when a chapter topic
was completely absent from a particular textbook, the analysis was adjusted
for this absence. For example, Rakel's Textbook of Family
Practice contained only 9 of 10 chapter topics selected for review
in the family and primary care medicine textbook category. In the analysis,
the chapter not present (adult acute respiratory distress syndrome) was ignored
and the content score for this textbook was calculated based on the average
of content scores for 9 rather than 10 chapters.
To compare coverage of various end-of-life domains, we conducted an
in-depth analysis of the domains in textbooks from a single specialty—internal
medicine. There were 14 chapter topics reviewed in each of the 6 internal
medicine textbooks. We identified the domains that received a consistent 0
or 2 rating for a particular chapter topic in all 6 internal medicine texts.
For example, the domain of epidemiology consistently (in all 6 internal medicine
texts) received a helpful content rating in 7 of the 14 chapter topics reviewed.
We evaluated the 13 content domains to identify consistently well-covered
or consistently poorly covered domains. We considered a domain to be well
covered if it had consistent helpful content ratings in all 6 texts in at
least 7 of the 14 chapter topics reviewed. We considered a domain to be poorly
covered if it had consistent absent content ratings in at least 7 of the 14
chapter topics reviewed.
The content scores for individual textbooks varied considerably (Table 1a). The highest helpful content score
was 44.2% in a psychiatry text, indicating that, on average, the chapters
reviewed in that text contained helpful content for 44.2% of end-of-life content
domains. The highest absent content score was 77.9% in an infectious diseases
and AIDS text, indicating that, on average, the chapters reviewed in that
text contained no information for 77.9% of end-of-life content domains. For
the 50 textbooks reviewed, the average helpful content score was 24.1% (range,
8.7%-44.2%), the average minimal content score was 19.1% (range, 6.2%-38.5%),
and the average absent content score was 56.9% (range, 23.1%-77.9%); thus,
overall, the textbooks contained helpful information in about one quarter
of end-of-life content domains, minimal information in about one fifth of
end-of-life content domains, and no information at all for more than one half
of end-of-life content areas.
Figure 1 displays the content
scores for each specialty. As a group, surgical textbooks had the least end-of-life
content with an absent content score of 71.8%. The quartile of specialties
with the least end-of-life content also included infectious diseases and acquired
immunodeficiency syndrome (AIDS) (absent content score, 70.0%) and oncology
and hematology (absent content score, 61.9%). The quartile of specialties
with the greatest amount of helpful end-of-life content included family and
primary care medicine and psychiatry (helpful content score, 34.4% each) and
geriatrics (helpful content score, 29.6%).
Some diseases or chapter topics that we reviewed were covered in the
textbooks of several specialties. As one might expect, the greatest amount
of helpful end-of-life information for coronary artery disease was found in
cardiology texts (average helpful content score, 34.6%). However, for many
other topics, end-of-life information was not necessarily where one might
expect to find it. For example, the highest average helpful content score
for Pneumocystis carinii pneumonia was found in internal
medicine texts (19.3%), whereas the lowest (7.7%) was found in the infectious
diseases and AIDS texts. For Alzheimer disease, the greatest amount of helpful
end-of-life information was present in family and primary care medicine texts
(average helpful content score, 50.8%), while neurology texts had the least
amount of helpful information (15.4%). Family and primary care medicine texts
had the greatest amount of useful end-of-life content for chronic obstructive
pulmonary disease (average helpful content score, 43.1%), not pulmonary texts
(32.7%) or internal medicine texts (20.5%). The most helpful information about
end-of-life care in lung cancer was found in family and primary care medicine
texts (average helpful content score, 28.2%), not in oncology texts (11.6%).
Specific content scores by chapters are provided in Table 2.
We compared the end-of-life domains for all 14 chapter topics reviewed
in the 6 internal medicine texts. The domains of epidemiology and natural
history were generally well covered in internal medicine, having consistently
received a domain rating of 2 (helpful content) in at least one half of all
chapters reviewed. In general, the domains of social issues, spiritual issues,
family issues, ethics, and physician after-death responsibilities were poorly
covered. For these domains, a 0 domain rating (absent content) was consistently
recorded in at least one half of all chapters reviewed. Two domains (spiritual
issues and physician responsibilities after death) were completely absent
from chapters covering particular diseases and were discussed only in a few
chapters devoted specifically to care at the end-of-life. Coverage of specific
domains by chapter are provided in Figure
Review of the tables of contents of the 50 texts revealed that 24 (48%)
had chapters on topics related to end-of-life care. Some of these chapters
were comprehensive, with titles such as "Care at the End of Life." However,
many of these chapters were focused on a specialized aspect of end-of-life
care, with titles such as "Ethical Issues in Clinical Medicine." Each of the
texts in emergency medicine (n = 4), family and primary care medicine (n =
5), and internal medicine (n = 6) contained a chapter on a topic related to
end-of-life care. However, one half or less of the textbooks in oncology and
hematology (n = 6), pediatrics (n = 4), and psychiatry (n = 3) had a chapter
on end-of-life care. None of the cardiology (n = 4), infectious diseases and
AIDS (n = 3), neurology (n = 3), pulmonary (n = 4), or surgery (n = 3) texts
included such a chapter.
We evaluated the indexes of the 50 textbooks for citations to 18 end-of-life
content key words. Out of 34,845 textbook pages, 697 pages (2%) contained
citations to at least 1 of the end-of-life care key words. For individual
textbooks, the percentage of pages with end-of-life care key words compared
with the total number of textbook pages ranged from 0% to 12%. Specialties
with the highest average index percentages were geriatrics (4.74%) and family
and primary care medicine (2.81%). Specialties with the lowest average percentages
were infectious diseases and AIDS (0.07%), pulmonary (0.09%), neurology (0.23%),
and surgery (0.36%). No end-of-life key words were found in the index of 7
of the 50 textbooks.
In analyzing how common causes of death are discussed in 50 best-selling
general and specialty textbooks, we found helpful information for less than
one fourth of end-of-life content domains and minimal coverage for one fifth
of those domains. We found no information for more than one half of the end-of-life
content domains one might reasonably expect to be covered in a medical textbook.
Consistently, there was a paucity of attention to the domains of social, spiritual,
family, and ethical issues at the end-of-life, and to the domain of physician
responsibilities after death.
Almost one half of the textbooks had chapters focused on at least some
aspect of care at the end of life, but many of these chapters were not comprehensive.
In addition, chapters focused on end-of-life care were uncommon in some specialties
(such as oncology, pediatrics, and psychiatry) and were completely absent
in the cardiology, infectious diseases and AIDS, neurology, pulmonary, and
surgery texts reviewed. Textbooks with the greatest amount of helpful end-of-life
content were in the specialties of family and primary care medicine, psychiatry,
and geriatrics. Textbooks with the least end-of-life content were in the specialties
of infectious diseases and AIDS, oncology and hematology, and surgery. Unfortunately,
specialty textbooks that physicians might read for information about a particular
disease often did not contain helpful information about caring for patients
dying from that disease. In several important instances, general rather than
specialty textbooks had better end-of-life coverage for a particular disease.
Finally, our analysis also confirmed major deficiencies in the indexing of
This textbook analysis was limited in that although 50 texts were reviewed
overall, the number of texts in each specialty was small and the content score
averages were not weighted. Although a top-selling book, only a single AIDS
text was reviewed. Some texts may have been updated subsequent to our review.
Also, some influential textbooks may have been excluded because they are not
In reviewing each chapter, it is possible that some domain ratings assigned
were inaccurate. However, the chapters were read, reviewed, and rated carefully
by experienced clinical researchers with evidence of high interrater reliability.
The rating was performed generously and liberally. It is possible that some
end-of-life content was present elsewhere in the textbook but not in the chapters
we reviewed. However, in the scoring, textbooks were not penalized for chapters
that were completely absent (despite their presence in competing textbooks).
And while some relevant content may have been missed if it was not identified
in the table of contents, not listed in the index, or not included in the
chapters reviewed, this hidden end-of-life content is likely not to be found
by busy students or clinicians.
It is possible that textbooks may have located all end-of-life content
in a single chapter devoted to end-of-life care or ethics, consequently receiving
a lower content score than texts that included their end-of-life content in
each individual disease chapter. However, in our analysis, we gave credit
for any mention of a topic, including cross-references to content elsewhere
in the text. Moreover, our analysis revealed that texts that include a chapter
devoted to end-of-life care generally scored well in specific disease chapters
throughout the book as well. Ideally, all texts would be cross-referenced,
even if general information (such as attending to spiritual issues) is presented
in a general chapter and disease-specific end-of-life content (such as management
of dyspnea) is presented in the relevant disease chapter.
The index analysis may be incomplete since the list of end-of-life care
key words reviewed included only 18 words. Other key words could have been
chosen. For example, although pain was one of the
13 domains, it was not included in the index analysis because the word pain
has great lack of specificity for end-of-life care. Most index references
for "pain" are for acute pain. Futility was not included
because it is primarily an ethical issue whose clinical implications are captured
by key words included in the analysis, such as withdrawal or withholding support.
The utility of an index analysis is only as good as the index itself.
Some textbooks had good end-of-life content that was not appropriately indexed
and that was therefore underrepresented in the index analysis. For underrepresentative
indexes, the lack of accessible information is a potentially major critique
of textbook quality and utility. Some textbooks received credit for end-of-life
content in the index analysis but when reviewed, the cited pages were actually
unrelated to end-of-life care (overrepresentative index). The finding of overrepresentative
indexes only strengthens our conclusion that commonly used textbooks from
multiple specialties provide limited end-of-life content.
Given the failing grade for medical textbooks, efforts should be undertaken
to improve them. We and others have suggested a number of steps that can be
taken by authors, editors, and publishers.20,32,33
Change has already begun. Partly in response to textbook reviews,20-22 publishers have already
commissioned updates of end-of-life care content in a major textbook in each
of the disciplines of nursing, pediatrics, and psychiatry and in 2 medical
textbooks, including the creation of new chapters devoted to end-of-life care.
Increasingly, our national professional accreditation and licensing bodies
(including the Joint Commission on Accreditation of Healthcare Organizations,
the National Board of Medical Examiners, and the US Medical Licensing Examination)
are requiring a higher standard of physician competence in end-of-life care.17 This may prove to be a powerful motivation for improvement
in best-selling textbooks.