SUMMARIES OF THE CONFERENCES
August 27-28, 1996
September 28-30, 1997
June 15-17, 2000
Summary of the First TIME Conference -- August 27-28, 1996
by Joan Teno, M.D., M.S.
University Center for Gerontology and Health Care Research
assisted suicide has become an issue of increasing public concern and
media attention. A central portion of court cases has focused on individual
rights. It has been argued that an important aspect of this debate ought
to be how well our hospitals and other health systems care for dying
patients. Drs. Melinda Lee and Susan Tolle have noted that the "silver
lining" of this debate may be the stimulus for health care institutions
to examine the quality of care for dying and seriously ill patients.
The aim of this conference was to provide health care institutions with
a resource guide (a "toolkit") that would allow them to examine
and improve their quality of care for dying patients and their families.
With funding support from the Nathan Cummings Foundation and the Robert
Wood Johnson Foundation, a multidisciplinary group of 27 persons assembled
to review current knowledge about measuring quality of care at the end
of life, make recommendations about the use of existing measures, and
outline important issues that need urgent work for the vision of the
"toolkit" to go forward. Deming stated that, "If you
don't measure it, you can't improve it." Our ultimate vision for
the "toolkit" was that health care institutions be able to
use the "toolkit" to examine care of the dying, identify opportunities
for improvement, and then undertake interventions to improve and enhance
the quality of care. The results of this conference represent an early
effort to review existing instruments to examine the quality of care
for dying persons and their families. This executive summary briefly
summarizes the vision for the toolkit and outlines important research
and design questions that we encourage both grant funders and researchers
consider in the design of future measures to examine quality of care
at the end of life.
for Measures included in the Toolkit
must be clinically meaningful and manageable in their application.
2. The focus of these measures is on the "middle manager"
who wants to ask the following questions:
are we doing in caring for dying patients?
What are our strengths?
What are our opportunities for improvement?
use of these measures will be for quality improvement. In the future,
with experience with the measures, development of guidelines, and research,
the use of these measurements will be extended to informing the consumer
and purchasers of health care.
3. Such measures must incorporate both the patient and family perspective
on the quality of care at the end of life. The medical record review
of people who have died is another important perspective on medical
care at the end of life.
4. We urge rapid cycles of improvement in measurement. The first Toolkit
should quickly become outdated with research and further development
Research is needed to understand who can best serve as
the respondent. Do you need to use multiple respondents? Such research
is needed to design valid instruments.
What is the cost effectiveness of various strategies to get information
on the quality of care?
Among the plausible sources of information on the quality of medical
care are the medical record, patient, and family interview (both prospective
and retrospective interviews after the patient's death). Each have their
own costs and limitations regarding accuracy of the data. Additionally,
there are various strategies for collecting data which ought to be evaluated
(e.g., self-administered, telephone interview, personal interview).
Research ought to seek to determine the most cost effective means to
get reliable and valid indicators of quality medical care.
How are the respondents' views influenced by the wording and location
of the question in the survey?
Research is needed to examine the degree to which the wording and the
location of questions influence the respondents' views. For example,
does asking questions on symptom data prior to questions on satisfaction
influence the patient's response? Total survey design that employs cognitive
interviews is important to understand the process undertaken by espondents
in answering survey questions. It is only through such efforts that
surveys will be reliable and valid measures. The above highlights key
areas for future consideration in the design of valid and reliable instruments.
Measuring the quality of care is the cornerstone to improving and enhancing
the quality of care. To that end, the "toolkit" conference
aimed to provide a systemic review of the existing instruments to examine
quality of care, make recommendations for promising instruments, create
new instruments, and identify a research agenda that focuses on the
rapid improvement in measurement of the quality of care at the end of
Summary of the Second TIME Conference -- September 28-30, 1997
following summary is adapted from the conference white paper.
Teno JM, Byock I, Field MJ. Research Agenda for Developing Measures
to Examine Quality of Care and Quality of Life of Patients Diagnosed
with Life-Limiting Illness. Journal of Pain and Symptom Management.
1999; 17, 2: 75-82.
the universality of death and recent national concerns about care at
the end of life, little attention has been given to developing the conceptual
models, measurement tools, and evidence base necessary for achieving
quality medical care and quality of life of dying patients and their
loved ones. The overarching goal of this second TIME conference was
to develop a research agenda for measuring quality of care and quality
of life for persons diagnosed with a life-limiting illnesses and for
persons who are in the process of "actively dying." More specifically,
the task presented for this conference was to reach accord on the following
three key questions:
What are the goals of a Toolkit of Instruments to Measure End of Life
should be patient-focused, family-centered, clinically meaningful,
and manageable in their application. At the same time, measures should
strive for high standards of reliability, validity, and responsiveness
(i.e., ability to detect change over time).
eventual Toolkit should strive for a user-friendly format (i.e., data
collection protocols, analytic strategy, and report formats). Instruments
should be in a format that would allow persons to "plug and play."
That is, there should be a core set of questions and specific modules
that would attend to other domains of the quality of care. The goal
should be to make it easy for an institution to perform a baseline
assessment of the opportunities to improve the quality of care or
assess the impact of a quality improvement effort.
the initial stages of development of the Toolkit, the main focus should
be on development of measures for quality improvement and research.
In the future, with experience in using measures for quality improvement,
refinement of guidelines, and further research across multiple health
care settings and geographic locations, measurements will be appropriately
modified or new tools created to be used for accountability.
should incorporate both the patient and family perspectives on quality
of care at the end of life.
should examine both the process as well as the outcomes of care. An
important goal of future research is to understand the relationship
of the system of care, the process of care, and the associated patient
and family outcomes.
Based on the current conceptual models of quality of care and quality
of life, what are the important domains in which existing measures need
to be refined or new measures developed?
measures should be developed from existing standardsespecially
when applied for purposes of accountabilityand those standards
should be based on accurate empirical information from descriptive
and experimental research. Choice of domains should reflect the consumer
viewpoint. Focus groups and in-depth interviews with seriously ill
patients, their families, and surviving loved ones can properly guide
selection of priority domains. Furthermore, measures should be synergistic
with ongoing work in the development of guidelines and standards.
What empirical research is needed to address the validity of proposed
measures, potential sources of information about the quality of care
and quality of life, and implementation of measurement tools in health
focus groups and other data collection efforts that recruit participants
from diverse cultures and social circumstances, patients and their
loved ones should have a voice in the development of measurement tools.
testing among people of different cultures and socioeconomic groups
represents an essential methodology in developing highly reliable
timing and sources of information about quality of care and quality
of life are important priority areas for further empirical research.
the inherent uncertainty in prognostication and the fact that many
actively dying patients are unable to be interviewed, proxies are
an important source of information on the quality of care. Important
questions remain on who should serve as the proxy. For example, should
it be the person who acted as the surrogate decision-maker or the
family member who supervised care on a daily basis?
for measurement tools to impact the quality of care, protocols must
be developed for data collection, analyses, and preparation of reports
that present the relevant information in an easy-to-understand manner
that highlights opportunities to improve medical and supportive care.
important consideration is the need to foster collaboration and to
maximize the return on limited research funding. One potential path
for proceeding is the establishment of a collaborative (potentially
named the Palliative Care Outcome Collaborative) which could have
two overarching goals. First, the collaborative could act as a clearinghouse
for existing measures in palliative care medicine. Second, the collaborative
could facilitate the creation of new measurement tools with participating
institutions involved in validating those tools and testing their
responsiveness to interventions.
with the white paper, other articles resulting from this conference
are published in a special issue of Journal of Pain and Symptom Management
(1999 February; Volume 17, No. 2). These articles include:
IR. Conceptual Models and the Outcomes of Caring. (pp. 83-92)
AL, Teno J, Patrick DL, Lynn J. The Concept of Quality of Life of Dying
Persons in the Context of Health Care. (pp. 93-108)
JM, Coppola KM. For Every Numerator, You Need a Denominator: A Simple
Statement But Key to Measuring the Quality of Care of the "Dying".
FJ, Coppola KM, Teno JM. Methodological Challenges for Measuring Quality
of Care at the End of Life. (pp. 114-119)
Summary of the Third TIME Conference -- June 15-17 2000
currently available. Please check back periodically.
Contact Dr. Joan Teno via email at Brown University.