National Summit on Medical Errors and Patient Safety Research
Panel 3: Particular Systems Issues
Testimony of Joanne Lynn and Sarah Myers, RAND Center to Improve Care of the Dying, and Americans for Better Care of the Dying
The first National Summit on Medical Errors and Patient Safety Research was held on September 11, 2000, in Washington, DC. Sponsored by the Quality Interagency Coordination Task Force (QuIC), the Summit’s goal was to review the information needs of individuals involved in reducing medical errors and improving patient safety. More importantly, the summit set a coordinated and usable research agenda for the future to answer these identified needs.
Individuals were selected by the Agency for Healthcare Research and Quality (AHRQ) to testify at the summit as members of the witness panels. Each submitted written statements for the record before the event, documenting key issues that they confront with regard to patient safety as well as questions to be researched. Other applicants were invited to submit written statements.
Disclaimer and Copyright Statements
The RAND Center to Improve Care of the Dying is a scholarly team that does research and
supports quality improvement aimed at guiding policy and practice to more effectively serve those
with eventually fatal illness. RAND is a non-profit research institution that helps improve policy and
decisionmaking through research and analysis.
Americans for Better Care of the Dying is a public charity that aims to ensure that all Americans
can count on good care at the end of life.
Background / Summary
Research Questions / Action Steps / References
Medical errors and other lapses in patient safety are particularly likely to harm patients with
serious, progressive, eventually fatal chronic illness. First, these patients have more
interactions with the health care system, and we have a higher risk of encountering medical
errors during that part of life. Second, this population actually has more serious effects from
errors because they often cannot protect themselves from risks and they have less reserve
with which to overcome the effects. Finally, the care system that serves them is rife with
treatment patterns that run counter to well-substantiated evidence-based practices, thus
subjecting those coming to the end of life to recurring mistakes. These medical errors make
the end of life much more distressingor even hasten death. There is evidence that we
could build a care system that would reliably serve us when we need it most. Many provider
organizations are undertaking efforts to improve their services to this population. The Center
to Improve Care of the Dying and Americans for Better Care of the Dying have been at the
center of major national collaborative quality improvement initiatives and we publish a
newsletter that characterizes the best projects in end-of-life quality improvement. (Exchange, at http://www.abcd-caring.org/xchange.htm) Therefore, we have come to know the
information needs of those who aim to provide more reliable and safe care for this
population. We urge the Quality Interagency Coordination Task Force (QuIC) and its
associated agencies to address these information needs as you develop national strategies
to enhance patient safety.
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Medication errors and other failings in patient safety are surprisingly common, often
preventable, and exert an enormous toll on health care spending. The Institute of Medicine
(Kohn et al., 2000) estimated that up to 98,000 deaths are caused each year by medication
errors in hospitals alone and that total costs associated with preventable adverse
eventsmedical errors that result in injuryin hospitals are between $17 billion and $29
billion annually. The IOM defined a medical error as "the failure of a planned action to be
completed as intended or the use of a wrong plan to achieve an aim", and an adverse event
as "an injury caused by medical management rather than the underlying condition of the
patient" (Kohn et al., 2000).
Although they have the potential to affect the quality of health care provided to all
Americans, medication errors and other patient safety lapses disproportionately affect the
sickest patients, both in terms of their incidence and in severity of the consequences
(Shelton et al., 2000; McDonald et al., 2000). Among the most vulnerable patients are those
who are very sick for a long time. Mostly, serious, long-term illness occurs at the end of lifeleading to more errors, more adverse effects, and more routine errors in treatment patterns.
Most Americans now spend most of our lives healthy, or living with rather minor and merely
annoying chronic illnesses. However, most of us also spend a few months or years living
with serious, progressive, eventually fatal illness as we come to the end of life. Although only
a few percent of the population are affected at any one time, probably three-quarters of us
travel this path for a few months or years before death, and probably more than half of
Medicare's payments go to treatments for these patients. Furthermore, the numbers
affected will more than double in the next two decades, as the Baby Boomers grow old
together (Federal Interagency Forum on Aging Related Statistics, 2000).
Who is included in this especially vulnerable group? We include patients with chronic
illnesses which will eventually cause death, though the timing is not clear, as well as those
eligible for hospice, whose upcoming death is fairly certain. Except for cancer, we most
often die within a few days or weeks of having had reasonably good likelihood of living for six
months (Lynn, 1997). These patients make a coherent group because the services needed
by all such patients are similarcontinuity, symptom prevention and control, family support,
advance care planning, and emotional support through loss and bereavement. Rescue from
the jaws of death may still be important, but it is not usually as importantor as achievableas it is for healthier patients.
Just half a century ago, most people died relatively quickly from injuries, infections, and
acute conditions. In contrast, Americans are now likely to live into old age and then to live
for months or years with the chronic diseases that will eventually kill them; many thousands
of people are living with disabling and progressive illnesses such as heart disease,
emphysema, stroke, dementia, and cancer. Nearly nine out of ten persons who die while
elderly and covered by Medicare have one of these diagnoses in the year before death
(Hogan et al., 2000) Even if health care and life style improvements delay the onset of
disabling disease, each one of us still will die, and only a few of us will die without substantial
Throughout their course, these patients tend to have substantial suffering, multiple
hospitalizations, and high costs. Three-quarters of Medicare beneficiaries who die have at
least one hospitalization in their last year of life, and Medicare pays an average of $26,000
per beneficiary in their last year. Furthermore, 25 percent of total Medicare outlays are spent
on services during the last year of life (Hogan et al., 2000).
Sometimes health care professionals wrongly assume that patients who are already
seriously ill or dying cannot be vulnerable to much harm. They may believe that those at the
end of life have already received their bad news, they are only biding their time, and they are
suffering alreadythey might seem to have little to lose. Perhaps this biased attitude gave
rise to the fact that neither the IOM report (Kohn et al., 2000) nor most other recent reports
on patient safety specifically address the disproportionate burden of those suffering serious
chronic illness, though other vulnerable population groups such as children are targeted for
Quite the opposite, we contend that the time one has at the end of life often is especially
precious. Indeed, the end of life can be very enrichinga time of enormous personal and
spiritual growth, as well as a time to heal broken relationships and do the things that one
always wanted to do (Lynn & Harrold, 1999). Safe, reliable, high-quality care will benefit
these patients at least as much as patients with less threatening illnesses. In addition, many
reformers are demonstrating that real improvement can be achieved [see, for example, the
successes reported in issues of Innovations in End-of-Life Care
(http://www.edc.org/lastacts/) and ABCD Exchange (http://www.abcd-caring.org/xchange.htm)].
Several factors make individuals at the end of life more vulnerable to medical errors and
resulting adverse events:
- Persons living with advanced illness have substantially increased exposure to medical
errors, including medication mistakes, improper procedures, and missed diagnoses.
Even as early as 25 years ago, researchers recognized that medication-associated deaths
were more common "in the cases of severely or terminally ill patients treated with potentially
highly toxic drugs." (Caranasos et al., 1976). We now also know that the combinations of
drugs that they take can lead to other problems such as drug interactions. As the IOM
Committee pointed out, "the potential for medication-related error increases as the average
number of drugs administered increases." (Kohn et al., 2000) The number of drugs taken by
older individuals (AARP, 1996)especially those with a serious illness (Corcoran,
1997)exceeds the number of drugs taken by other population groups and the drugs that
they take are often more toxic (Corcoran, 1997).
Not only do they take more medications, but this vulnerable group of patients is also more
likely to be in complex care settings, like hospitals and intensive care. The median patient
with heart failure spends 12 percent of the last three months in a hospital bed; those with chronic
obstructive pulmonary disease are in hospitals for 22 percent of that time; and those with cirrhosis
are hospitalized for 20 percent of the time (Freeborne et al., 2000).
So, even if errors were spread randomly over encounters with health care, it is the very sick
who would be the victims most often. McDonald et al. made the point that people who were
at risk of errors were also often at high risk of dying, with or without errors (McDonald et al.,
2000). While their point was that this makes it difficult to attribute causation of death to the
error, they also illuminated the rather obvious fact that most errors will happen to those who
are most sick.
- This population actually has more serious effects from errors because they often cannot
protect themselves from risks and they have less reserve with which to overcome the effects.
Patients at the end of life are often too ill to monitor the care they receive. Not only do they
have to navigate a fragmented, complex system of care, but also they also often must
confront significant complexity and uncertainty within their own lives. Most are becoming frailthe average age at death in the nation is now 79 for women, and 74 for men (Federal
Interagency Forum on Aging Related Statistics, 2000). Many have cognitive deficitsprobably more than half have dementia, stroke, delirium, or coma affecting their last weeks
or days (The SUPPORT Principal Investigators, 1995; Seale and Cartwright, 1994; Lynn et al.,
The Agency for Healthcare Research and Quality (AHRQ) recently recommended 20 ways
that consumers can help prevent medical errors in their own care (AHRQ, 2000), including
making sure that all of your doctors know about every medication you are taking and making
sure your doctor knows about any allergies and adverse reactions you have had to
medicines. These recommendations are not easy for many patients to follow and would be
particularly difficult for seriously ill, frail, or older individuals. Patients at the end of life also
deserve to be more focused on attending to their affairs and saying goodbye. They should
not have to monitor their medications or keep a vigilant watch over their myriad health care
Minor medication errors may go unnoticed in young, relatively healthy patients. However,
individuals with progressive, chronic illness are often left terribly weak as a result of their
conditions and the effects of minor errors may therefore be magnified. Patients with little
physiological reserve are simply less likely to absorb and accommodate to a stress caused
by an error. For example, a medication error can overwhelm a frail person with a relatively
minor drug interaction, a hormonal imbalance, or another adverse effect.
- People at the end of life are exposed to pervasive patterns of care that run counter to
well-substantiated evidence-based practices, thus subjecting those coming to the end of life
to a nearly endless series of mistakes.
As recently as half a century ago, very few people lived very long with serious and
progressive illness. As the United States built a health care system in the twentieth century,
we mostly worried about whether people could get treatment for episodes of illness,
especially operations, diagnostic procedures, and close monitoring during technically difficult
treatments. With Medicare, we succeeded: beneficiaries can readily get most hospital-based care. However, no one engineered the care system to meet the needs of burgeoning
numbers of people living with serious, progressive chronic illness, and it shows. (Fox, 1993).
Even though good evidence shows that comprehensive, continuous care for persons with
serious heart failure enhances their lives, reduces their hospitalizations, and costs less (Rich
et al., 1996), that care is not generally available to Medicare beneficiaries. Though good
evidence shows that people do much better if they are treated for many problems at home
(Inouye et al., 1999; Leff et al., 1999), appropriate evaluation and treatment services are not
commonly available at home or in nursing facilities. Only about half of the patients who
need pain treatment in nursing homes get any suitable medication (Won et al., 1999). The
examples are legion, and we spell out a few here in more detail.
Non-treatment of pain, delirium, and other symptoms
Symptoms such as pain (The SUPPORT Principal Investigators, 1995) and dyspnea
(Dudgeon et al., 1996)as well as patients' preferences related to symptom
managementare often addressed too late or not at all, leading to much suffering and
decreased quality of life. Good evidence underlies guidelines and their implementation,
(AHRQ, 1992; Du Pen et al., 1999), yet we know that far too many patients still experience
moderate to severe pain (Tolle et al., 2000; SUPPORT Principal Investigators, 1995),
delirium (Inouye, 1999), and depression (Breitbart and Passik, 1998) at the end of life. The
evidence shows that many symptoms could have been relieved quite effectively. Every
practitioner would claim to aim to relieve and prevent symptoms, yet they engage in a care
system that routinely ignores the opportunities to do so. The care system has practices that
ensure high rates of untreated symptoms, patterns that no one would defend as intended.
They persist from inertia and inattention.
Routine discontinuity within and among provider programs
Care provided to individuals at the end of life often comes from numerous providers, both at
one time and over time as the patients move from home to hospital and nursing home.
These providers may not communicate effectively with one another about their patients'
care. This fragmentation can lead to prescriptions for medications that cause drug
interactions and increased incidence in problems with medication use by the patients. One
study of medication use in 111 terminally ill patients found that 90 percent of those patients
had more than one health care provider who had prescribed medications for them and that
60 percent did not take all of their medications properly. Patients for whom a hospital was
the main provider were less likely to use their medications properly (Zeppetella, 1999). In
addition, transfers among providers commonly lead to the loss of critical informationdecisions not to resuscitate, information about proxy decision-makers, and even information
about past medical history. Each of these increases the risk of serious adverse events.
Location of care for provider convenience, rather than efficiency or family support
Patients in these vulnerable populations are often admitted to the hospital for lack of a better
place to put them. In fact, they are often inappropriately transferred from their homes or
nursing homes into hospitals despite the availability of an alternate setting for their care
(Saliba, 2000). Only in hospice is care routinely available from the same team over time,
with 24-hour on-call availability, and with continuity across transfers between home and
inpatient care. Hospice is used by only about one-fifth of Medicare patients, for only about
three weeks on average. Except for hospice care, errors arising from transfers and
miscommunication are commonplace (Loxterkamp, 1996) and room for errors increases
Lack of focus on advance care planning
Most Americans still do not receive the information that they need to plan ahead for their
deaths and to do the things that make dying more likely to reflect the patient's preferences
and prioritieswills, advance directives, goodbyes, etc. In particular, many are not given the
opportunity to specify the approach to treatment (including types of medication, use of life-sustaining devices, and other medical interventions) that they would like to be used or
avoided when they reach later stages of their illness. This lack of clarity increases the
possibility that they will receive unwanted and inappropriate medications or procedures.
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The services that are provided for people with serious, eventually fatal, chronic illnesses are
systematically maladapted to their needs. Even though practitioners aim to relieve
symptoms, to ensure continuity, to avoid disruption, and to make plans, they work in systems
that do not support good practices. Even when good evidence instructs us as to the merits
of alternatives, few adopt those alternatives. Reforms that ensure reliable and safe care will
require articulated aims, reinforced intentions to make improvement, innovations, and
measurement for feedback and guidance.
One example of measurement to guide change is the Assessing Care of Vulnerable Elders
(ACOVE) project, which has created a quality-of-care assessment system for ill older
persons (Sloss et al., 2000). This system started with identifying older people at risk of
death or health deterioration, then used geriatrics experts to define guidelines for quality-of-care. Conditions and issues addressed include congestive heart failure, continuity and
coordination of care, dementia, depression, and end-of-life care. The guidelines focused
upon the quality of care for persons not in hospitals, including nursing homes, and sought to
create the structure of a system to apply evidence-based quality indicators differentially,
based on patient preference and health state. Identifying errors by applying ACOVE criteria
would be an example of a way to assess improvements and compare performance in patient
safety for these vulnerable elderly.
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In order to affect the health care system substantially, a research agenda on preventing
medical errors and increasing patient safety must include a focus on gathering data
describing the needs of the most vulnerable patients. Insofar as these burdens
disproportionately affect the frail and dying population, they will affect all of us eventually,
first as caregivers and later as patients. Furthermore, because of the burgeoning elderly
population, these errors will become much more prevalent and costly over the next few
decades, unless we act now.
As examples of the information that would illuminate how to reduce medical errors and
enhance patient safety for patients at the end of life, we offer the following five research
questions. Each research question is followed by a brief description of our current state of
knowledge and practice. Other questions will prove to be important, but answering these
would be responsive to the most pressing needs that those who aim at improvement need.
Research Question 1. What are some alternative models for the current definition of
"cause of death"? When should medical errors that are part of the chain of causation
that ends with death be counted as a cause of death?
Our current understanding of "the cause of death" forces us to assign a single incident or
diagnosis as the necessary and sufficient cause of the timing of each person's death. For
younger patients with cancer or an overwhelming heart attack, that model of attributing one
cause for each death works fairly well. However, the usual person now dies past age 75 and
with a complex chain of causesmultiple illnesses, multiple complications, multiple medical
interventions, multiple decisions as to what treatments to pursue, and multiple errors. We
have very little understanding of the contributions of various elements in the causal chain
and we have even less useful language with which to explain a death as having multiple
This is important in work to reduce medical errors and enhance patient safety because the
motivation for change and the monitoring of progress requires a method by which the
contribution of errors to death can be reliably assessed.
Here are some of the information needs that would be addressed through research in this
- We need to learn about better ways to monitor the patterns of care that affect the timing
and manner of death, including the contribution of medication errors and other adverse
- We need a better understanding of the physiology near death. Working on the
contribution of medication and other errors and their role in the course would be a window
into better understanding of the usual course leading to death.
- We need to learn more about accurate modes for predicting lifespan, and more effective
ways to monitor the effects of alternative treatment patterns on lifespan among those with
established serious illness.
Research Question 2. What are the magnified effects of routine or "ordinary" errors
(such as improper dosage or timing of medications, incorrect medications, and
medication interactions) in these patients as compared to the more robust general
The QuIC (2000) points out that "Errors may be particularly difficult to recognize because
variations in an individual's response to treatment is expected…medical professionals may
not recognize that a particular product or procedure may have contributed to or caused the
problem because the patient is already ill." Indeed, many of us will never know that we have
been the victims of "small" medical errorserrors that do not result in serious adverse
effects. Most of us are relatively healthy and hardy and can withstand the assault of a small
dose of the wrong medication, perhaps at the wrong time, or an unsafe combination of
drugs. Older patients and those at the end of life are more likely to suffer adverse
consequences (Brawn and Casleton, 1990).
The same "ordinary" mistake in timing or dose of a drug that does not result in a discernable
adverse effect for a healthy 25 year-old can lead to significant morbidity or even speed death
in a frail 78 year-old person who is taking a complex combination of drugs to manage
congestive heart failure. Indeed, medication is more likely to cause cognitive impairment
(Moore and O'Keefe, 1999) in the elderly. Therefore, we must be wary of categorizing any
type of error as insignificant unless we assess the impact upon the most vulnerable.
Considering the small mistakes affecting the 25 year-old to be ordinary can make us
inappropriately complacent about the commonplace errors by systems and providers that
also treat the frail elderly.
Here are some of the information needs that would be addressed through research in this
- We need to understand the mechanisms of excess morbidity and mortality and the
thresholds of injury for these very vulnerableand most at riskpeople. Limiting their
exposure and impact from medical error seems likely to require the best methods of
reducing incidence of error as well as steps taken to buttress physiological and social
- We need health services research on implementation of quality patterns, as well as
innovation and evaluation of service delivery patterns.
- We need to understand how error-reporting systems might allow us to better understand
the disproportionate incidence of medical errors in different types of patients.
Research Question 3. Non-treatment or inappropriate treatment of pain, depression,
dyspnea, and other symptoms that are common at the end of life are medical errors
under the IOM report definition. What would be the effectiveness of subjecting these
errors to the same kinds of system engineering, accountability, and national goal
setting that is being employed for medication errors?
Research has shown that, with appropriate medication, the symptoms associated with
serious and eventually fatal illness can sometimes be prevented and can virtually always be
reduced. Pain can be controlled without accepting substantial sedation in up to 90 percent
of terminally ill cancer patients (Portenoy et al., 1999) and depressionif detectedcan also
be relieved (Block, 2000). Of course, with terminal sedation, all pain can be controlled (Quill
and Byock, 2000). Sadly, we know that appropriate management techniques are not often
employed (Portenoy et al., 1999), or are used only after much suffering has already been
endured (Lloyd-Williams et al., 1999). Relief is too often the exception rather than the rule.
Others studies have pointed to differences in management of depression among elderly
individuals of different races (Blazer et al., 2000).
Here are some of the information needs that would be addressed through research in this
- We need to learn how to change the behavior of physicians and other health care
providers so that they recognize and treat pain, depression, and other symptoms.
- We need to learn how we can make pain and other symptom assessment a routine part of
the care of our patients, as well as create a system for assuring that appropriate
responses follow diagnoses.
- We need to develop better routine practices that ensure that symptoms are prevented,
assessed and treated.
Research Question 4. How can provider organizations and public health planners
arrange services in a way that will provide efficient, sustainable, reliable, and safe
care for this population?
The QuIC (2000) states that, "The decentralized and fragmented nature of the healthcare
delivery system (some would say "nonsystem") also contributes to unsafe conditions for
patients and serves as an impediment to efforts to improve safety." No single part of our
healthcare system is more decentralized and fragmented than that patchwork set of services
that currently is the norm for serving those at the end of life. Yet, we often have evidence
that other patterns of care greatly enhance outcomes. For example, a study of Medicaid
enrollees (Gill et al., 2000) found that continuity of care delivered by a single health care
provider led to a decrease in the incidence and number of emergency department visits.
Good palliative care programs can cut the rate of pain, anxiety, depression, family caregiver
burden, shortness of breath, and hospitalization (Jenkins et al., 2000; Lynn et al., 2000a;
Lynn et al., 2000b; Du Pen et al., 1999; Doyle et al., 1998).
Although in many fields the scope and shape of the problem is fairly well known, the nature
and distribution of suffering at the end of life in the U.S. has never been authoritatively
measured. Public policy and improvement activities are often motivated by and evaluated by
anecdotes. It seems obvious that system improvement needs a background of epidemiologypopulation-based measures of the quality of care and the quality of life for those with
serious, eventually fatal illness. The few forays into this field thus far are quite narrow or are
not in the U.S.: Measures of advance care planning in La Crosse, Wisconsin (Hammes and
Rooney, 1998); measures of expectations of dying in half of a county in Connecticut (Brock
and Foley, 1988); measures of dying taken from a chart review in New Hampshire (Foundation
for Healthy Communities), and much more comprehensive measures of symptoms and
services near death in Britain (Seale and Cartwright, 1994).
In addition, while chronic disease epidemiology has been a mainstay of public health, the
focus on the phase at the end of life has not. A number of state and local public health
departments have come to the Center to Improve Care of the Dying seeking help with such
questions as the setting in which death occurs, the presence and utility of advance
directives, the range and effectiveness of measures to prevent pain and suffering, and the
quality of dying for the decedent. They need the research methods and benchmarks that the
work of the QuIC could generate.
Here are some of the information needs that would be addressed through research in this
- In order to widely implement best practices, we need better understanding of all of the key
components of system improvement: for example, the elements and design of optimal
services, the social and psychological reasons for adherence to old patterns and for
readiness for change; the economic and regulatory factors that shape implementation of
new patterns; and effective strategies for monitoring improvement.
- We need to understand much more about quality improvement as a method for effective
social engineering and system re-design.
- We need to learn how to engineer continuity and error-free care when very sick patients
are transferred among provider programs and settings, including encouraging regional
efforts to achieve reliability and high quality care.
Research Question 5. Should emergency hospitalizations of individuals at the end of
life be considered a potentially preventable medical error and a significant risk factor
for adverse events?
Hospitalization has been associated with a decline of health in older individuals, regardless
of their baseline health status. A study of 60 functionally independent patients aged 75 and
older found that, upon discharge, 75 percent were no longer independent (Lamont et al.,
1983). In their study of factors associated with six-month mortality in 6784 patients aged 65
and older in the community long-term care setting, Fried et al. (1998) found hospitalization to
be a predictor of death. Creditor (1993) reviewed the potential primary effects of
hospitalization on the aged including deconditioning, falls, dizziness, increased fracture risk,
pressure sores, and functional incontinence. He noted that because of these effects, "A high
percentage of hospitalized elderly persons discharged to nursing homes never return to their
homes or community."
Particularly for patients at the end of lifemany of whom are agedthe hospital can be a
very hazardous place. Most hospital situations are better suited to acute, curative care, with
patients who can withstand long periods on hard beds, or long waits in strange settings.
Very sick patients, in contrast, do best with diagnosis and treatment where they live if at all
possible. Good self-care, early intervention, and comprehensive advance care planning are
probably quite effective in reducing the risk of unplanned hospitalizations in this population.
We need innovation, evaluation, and research to learn whether the systemic breakdowns
and inappropriate decision making that lead to unplanned hospitalizations in this population
can be remedied.
In the Breakthrough Series Collaboratives led by RAND's Center to Improve Care of the
Dying, the Institute for Healthcare Improvement, and the Veterans Healthcare System, many
provider groups reduced unnecessary hospitalizations through the use of innovative quality
improvement methods. For example, nearly all of the programs that worked with heart and
lung failure patients measurably cut their rate of hospitalization. One program had trained
nurses available to come to the patient's home within half an hour to help with an
exacerbation of symptoms. That team cut emergency room care to nearly one-tenth of the
background rate (Lynn et al., 2000a). Teams that were able to reduce hospitalization rates
were able to enhance the use of home care and hospice as well as build the expertise of
nursing home staff in the area of palliative care.
Measures being implemented for making patient care safe during hospitalization, of course,
could also be applied to non-hospital settings of care. Perhaps medication ordering systems
can be deployed. Perhaps also, service delivery will have to learn to use these non-hospital
settings in order to preserve the patient's daily patterns, keep the patient walking and
capable of self-care, and make possible other good outcomes for patient and family.
Here are some of the information needs that would be addressed through research in this
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- We need to learn whether gains from evidence-based practices such as those described
above are generalizable, sustainable, and replicable.
- We need to better understand the differences in quality of life and survival outcomes
between patients admitted to hospitals versus those of patients treated where they live.
Summary and Action Steps
Based on the information needs described above, we suggest that the QuIC include a
number of relevant items on its action agenda. These items fit well with the QuIC's
Compendium of Action Issues, including: research planning, learning from errors, raising the
standards for health care organizations, and building purchasers' awareness of the problem.
However, they add some specificity to the QuIC's points in showing how the needs of those
with serious, eventually fatal chronic illness could be incorporated into an action agenda.
- The QuIC and its affiliated agencies should make individuals with progressive, eventually
fatal, chronic illnesses a special, named, target population in initiatives to improve patient
safety and reduce medical errors.
- AHRQ should include a focus upon these vulnerable patients in its research agenda on
preventing medical errors and enhancing patient safety.
- The QuIC and its affiliated agencies should ensure that the merits of all proposed patient
safety initiatives, including applications and measures, are specifically assessed in terms of
their effects on this population.
- The Veterans Administration, the National Institutes of Health, the Health Resources and
Services Agency, the Health Care Financing Administration, the Department of Defense and
other clinical services providers or regulators should sponsor innovations in service delivery
that offer the potential to engineer better practices into routine system functioning, in such
areas as computer-based drug ordering, ensuring continuity, tailoring care plan to
preferences, and integrating services across provider types. Once proven, they should also
learn to implement evidence-based improvements system-wide.
- The National Institutes of Health should sponsor basic clinical research into the effects of
medication errors on severely ill individuals.
- The patient safety practices and patient safety measurements being developed by the
Quality Forum should include a set of measures and practices specifically for serving these
particularly high-risk patients, modeled on the insights from ACOVE and similar projects.
Patients at the end of life are particularly vulnerable to medication errors and other lapses in
patient safety. Now that we know that adequate levels of comfort and quality of life can often
be maintained and even enhanced in the days and months that precede death, we would be
remiss if we failed to correct the systemic issues that increase the impact of medical errors
on this population. These errors can make the end of life for these patients a more
distressing time and can hasten death. Attending to making the care system safe for the
very sick is justified by the disproportionate burden on this population, and the opportunity to
do substantial good by making care reliable for the population that most needs reliable care.
Improving care at the end of life is also in each of our best interests.Each of us faces being
old, frail, and chronically ill in the months before death. We need a care system we can
count on to care for us well and to reducerather than increase the threat of unnecessary
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