Beruflich Dokumente
Kultur Dokumente
Objective: Recently, end-of-life (EOL) issues have captured the attention of the public health
community. This study reports a project to help state health departments better under-
stand their potential role in addressing EOL issues and develop initial priorities for EOL
activities.
Methods: The project involved two studies. Study 1 (October 2002 to September 2003) involved a
concept mapping process to solicit and organize recommendations from key stakeholders.
Concept mapping integrates qualitative group processes with multivariate statistical
analysis to represent the ideas of stakeholders visually through maps. A key-informant
approach was used to identify stakeholder participants with expertise in aging, cancer,
public health, and EOL. In two meetings, stakeholders used the maps to develop short-,
intermediate-, and long-term recommendations for EOL initiatives. Study 2 (October 2003
to September 2004) involved a modified Delphi process with three iterations to prioritize
recommendations for initial action from among a group of short-term recommendations.
Results: Study 1 resulted in 103 recommendations for EOL initiatives across nine domains. Study 2
resulted in consensus on five initial recommendations from three domains: identifying an
EOL point of contact in state health departments, collecting and analyzing data about
EOL, incorporating EOL principles into state comprehensive cancer control plans,
educating the public about hospice and palliative care, and educating the public about the
importance of advance directives.
Conclusions: Diverse perspectives of key public health stakeholders resulted in a series of short- and
longer-term recommendations for EOL action. These recommendations can guide future
efforts by state health departments and other public health agencies to address EOL issues.
(Am J Prev Med 2005;29(5):453– 460) © 2005 American Journal of Preventive Medicine
R
ecent advances in medical care and prevention
hospitals,13,14 EOL care gained recognition as an im-
have expanded the boundaries between life and
portant clinical issue warranting improvement.15–17
death and have challenged expectations of how
the end of life (EOL) should be. Periodically during Several organizations have focused on improving
the past 30 years, EOL issues have been the focus of health system factors and state policies to facilitate
societal debate, as providers, medical ethicists, policy- quality EOL experiences for patients and families.
makers, and the public considered the important ques- Despite its demonstrable importance as a societal
tions about what constitutes quality of life at life’s end health concern, EOL has only recently captured the
and withdrawal of life-sustaining treatments.1–3 Studies attention of the public health community. In the October
indicate that EOL is associated with a substantial bur- 2002 issue of the American Journal of Preventive Medicine,
den of suffering among dying individuals4 –7 and health Rao et al.18 proposed that EOL be recognized as a public
health issue and that an agenda be developed that is
relevant to the public health community. Such an agenda
From the Division of Adult and Community Health (Rao, Anderson),
and Division of Cancer Prevention and Control (Stokes), Centers for should consider the work in EOL already performed by
Disease Control and Prevention; School of Medicine, Emory Univer- other organizations,19 –21 and involve a process of priority
sity (Rao); Association of State and Territorial Chronic Disease
Program Directors (Alongi, Jenkins); Rollins School of Public Health,
setting by public health and its partners.18
Emory University (Anderson), Atlanta, Georgia; and Concept Sys- The public health community consists of federal,
tems, Inc. (Kane), Ithaca, New York state, and local health agencies. State health depart-
Address correspondence and reprint requests to: Jaya K. Rao, MD,
Centers for Disease Control and Prevention, 4770 Buford Hwy, NE, ments fill a unique link between federal agencies that
MS K-51, Atlanta GA 30341. E-mail: jrao@cdc.gov. fund public health activities and local health agencies
Project Overview
The Association of State and Territorial Chronic Dis-
ease Directors Program (CDD) is a nonprofit organiza-
tion that focuses on chronic disease prevention and
control at the state and national level. The CDD Figure 1. The concept mapping process.
conducted this project with funding support from the
Centers for Disease Control and Prevention (CDC).
Representatives of both organizations (JKR, LKJ, JA, which integrates qualitative processes (brainstorming
LAA, and GAS) formed a steering committee to oversee and sorting) with quantitative methods,24 –26 was se-
the project. An external advisory group, comprised of lected because it is designed for use with groups and
experts in EOL, public health, cancer, or aging issues overcomes geographic barriers. This method has been
(see acknowledgments), provided input on project used in several public health projects,27,28 and is con-
implementation and assisted with inviting stakeholders. sistent with the CDC’s Framework for Program Evalua-
The project involved two sequential and inter-related tion in Public Health.29
studies. Study 1 was conducted from October 2002 to The concept mapping process25,30 (Figure 1) in-
September 2003, and involved a concept mapping volves stakeholders in three activities: (1) brainstorm-
process. Study 2 was conducted from October 2003 to ing, (2) sorting and rating, and (3) and interpretation
September 2004, and involved a modified Delphi of concept maps. The stakeholders used a secure
process. website, mail, or fax to complete the first two activities.
In the brainstorming activity, all 211 stakeholders
were invited to provide specific ideas to complete the
Study 1 following statement: “To enhance the lives of seriously
Methods ill, injured, or dying people, a specific thing that the
Sample. A key informant approach was used to identify state or local health department could do or enable
stakeholders representing different perspectives re- others to do is. . ..” Because our goal was to elicit the
broadest set of responses, this statement was worded to
garding EOL. The stakeholders were invited based on
indicate that death could occur at any age (i.e., “peo-
their expertise (i.e., aging, cancer, chronic disease,
ple” rather than “adults”) and from various causes (i.e.,
public health, EOL) and organization (e.g., federal
“seriously ill and injured” rather than “terminally ill”).
health agency, foundation, state health department,
All ideas were submitted anonymously. The steering
etc.). The advisory group and steering committee in-
committee eliminated statements that were redundant,
vited a core group of stakeholders (n ⫽48) who, in
did not make sense grammatically, or were not directly
turn, asked others to participate. Through this process,
relevant to the project aims. This process yielded 124
211 stakeholders were invited.
unique statements.
Procedures. Given that there have been no investiga- There were two levels of involvement of stakeholders
tions of public health professionals’ perspectives re- in the sorting and rating activity. The core group of
garding EOL, the use of qualitative methods to elicit stakeholders sorted the 124 statements into categories
diverse viewpoints was warranted. Concept mapping, or themes. They were instructed to use their own
Results Study 2
Methods
Because the brainstorming was performed anony-
mously, a response rate could not be calculated among Sample. Twenty-seven stakeholders, most of whom par-
the 211 stakeholders invited to participate in that ticipated in Study 1, were invited to participate in Study
2. The distribution of expertise and organizational type who did not respond were not permitted to participate
among this group was relatively similar to that of the in subsequent rounds.
participants in Study 1. Stakeholders received a worksheet that provided the
Procedures. The modified Delphi process is a struc- project background, definitions for the five clusters,
tured method that facilitates the development of con- and the short-term recommendations within each clus-
sensus among experts with diverse opinions.31–34 Two ter. In each round, they identified their top five public
steering committee members (JA, LAA) managed this health priorities for the next 2 years. That is, among the
process. recommendations, stakeholders chose five statements
The short-term recommendations from the five most that they believed should serve as the initial priorities,
feasible clusters (Table 2) were included in the modi- and ranked them from 1 (highest ranking) to 5 (lowest
fied Delphi process. These clusters were (1) public ranking). The Round 2 worksheet contained the fre-
education, (2) patient education, (3) professional ed- quency of top five rankings (1 to 5) that each statement
ucation, (4) policy, and (5) research. The modified received in Round 1. The Round 3 worksheet included
Delphi process consisted of three rounds of rankings. the following information for each statement: the total
Stakeholders were given 2 weeks to respond to each number of top five rankings in Round 1 and frequen-
round and a 2-week break between rounds. Individuals cies of individual rankings (1 to 5) in Round 2.
Table 1. Importance and feasibility ratings for the nine clusters identified in the concept mapping process
Importance rating Feasibility rating