Improvements in medical science and healthcare have gradually changed the nature of dying, according to the National Institutes of Health (NIH). Death is no longer most likely to be the sudden result of infection or injury, but is now more likely to occur slowly, in old age, and at the end of a period of life-limiting or chronic illness. As a result, a demographic shift is beginning to occur that will include an increase in the number of seriously ill and dying people while the number of caregivers decreases. Faced with this challenge, the best evidence that science can offer must be applied to guarantee the quality of care provided to dying individuals and their surviving loved ones.

In 1997, the Institute of Medicine published Approaching Death: Improving Care at the End of Life. The report triggered a series of activities meant to improve the quality of care and the quality of life at the end of life. Among these activities was a series of research solicitations by The National Institute of Nursing Research (NINR) that focused on issues related to end of life. To examine the results of these efforts, evaluate the current state of the science regarding care at the end of life, and identify directions for future research, the NIH held a State-of-the-Science Conference on improving end-of-life care in December at the NIH campus in Bethesda, Maryland. Society member Nicholas Ward, MD, assistant professor of medicine at Brown Medical School, represented SCCM at the conference and said he found it extremely helpful to those working in the field of end-of-life research as well anyone working with dying patients. “The speakers at this State-of-the Science Conference compiled and presented a comprehensive summary of all published data in end-of-life research in the last several decades clarifying what is known and, more importantly, what is not known,” Dr. Ward said.

The following are excerpts from an NIH statement highlighting the issues, concerns and conclusions addressed during the conference. The complete statement can be found at www.nih.gov/news.

Evidence does not support a definition for the interval referred to as end of life or its transitions

A lack of definitional clarity exists related to several concepts and terms, such as palliative care, end-of-life care, and hospice care. Too often these terms are used interchangeably, and the distinctions for each term must be clarified for patients and their families, providers, policymakers, and investigators. The lack of definition for the key terms represents a barrier to research on improving end-of-life care. Several outcome variables are important indicators of the quality of the end-of-life experience for the dying person and for surviving loved ones.

Examples of broad outcome domains related to end of life include physical or psychological symptoms, social relationships, spiritual or philosophical beliefs, hopes, expectations and meaning, satisfaction, economic considerations, and caregiver and family experiences. Quality of life is a domain commonly proposed as an end-of-life outcome. However, the association between quality of life and end-of-life care could be strengthened by clear definitions and consistent measurements of quality of life.

• Valid measures exist as applied to some aspects of end of life among individuals with cancer. However, these same measures have not been used consistently or validated longitudinally in other diseases, in diverse settings, or with diverse groups.
• Proxies, defined as surrogate responders for persons at end of life, are frequently the only source of measurement for an end-of-life outcome. The evidence indicates that proxies report objective states such as mobility more accurately than they report subjective states such as pain, depression or fatigue. Missing data are a limitation of most measures when used in persons at the end of life.
• Many measures may not be of use among persons with severe cognitive and/or communication disorders.
• There are insufficient measures for evaluating end-of-life outcomes among children and their caregivers.
• Few tools have undergone rigorous examination for conceptual and measurement equivalence among groups sampled from ethnically diverse populations.

Several patient, family and healthcare system factors are associated with improved or worsened outcomes.

General system factors can affect outcomes. A significant problem at the healthcare system level is that care is fragmented, consists of multiple providers, and requires the patients to make many transitions in their care. Other problems include the lack of flow of information across providers and settings, different skill levels in providers, and financial incentives that perpetuate discontinuity and discourage high-quality care. Models of effective integrated care at the end of life usually are developed in academic settings or in closed healthcare systems - most notably within the veterans’ healthcare system. They have not been applied or evaluated in settings where most persons at the end of life receive their care.

The design of the current Medicare hospice benefit limits the availability of the full range of interventions needed by many persons at the end of life. These design limits include a six-month prognostication to death, a forced choice between skilled care and hospice care for Medicare patients entering nursing homes from hospitals, and limitations on the availability of therapies, such as radiation for symptom management. Requirements for “pass through” payments between hospice and nursing home providers also hinder the process.

Several processes and interventions are associated with improved or worsened outcomes.

A growing body of research exists on specific care interventions designed to improve outcomes for the end-of-life experience for patients and their families. Studies have suggested that:

• The quality of evidence on symptom management appears to be limited, with the exception of pain management
• For some groups of adults, interventions in the area of bereavement are most effective when requested by the grieving party
• Encouragement to initiate advance directives (i.e., legal documents such as living wills and healthcare powers of attorney) alone have not been shown to improve outcomes in nondementia patients
• Advanced-care planning, a process for preparing for the end of life, including discussion of death, is different from advanced directives and needs further study to examine its effectiveness
• Communication among providers, patients and families is believed to improve care and is an important component of palliative care
• Spirituality is consistently defined as a critical domain in end-of-life care, but research is very limited.
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Future research directions for improving end-of-life care.

While there is a growing body of research covering a wide range of issues, research is still in its infancy in terms of rigorous testing and evaluation of modes of care, in terms of patient and family outcomes, and in terms of resource utilization. Research is needed to understand patient, caregiver and healthcare system influences on these outcomes. Recommendations include:

• - Developing conceptual models and frameworks to guide systematic research in end-of-life care. This would include providing operational definitions of end-of-life and palliative care.
• - Making efforts to further develop and agree on common definitions and constructs as they relate to end-of-life and palliative care.
• Creating a network of end-of-life investigators and well-defined cohorts of patients to facilitate coordinated interdisciplinary, multi-site studies. This should include establishing new networks of end-of-life investigators. Existing networks, such as the National Clinical Trials Cooperative Groups, also should be expanded so they have a critical mass of end-of-life investigators and appropriate study populations. These networks should enhance training of a new generation of interdisciplinary scientists.

Looking ahead to improve end-of-life care.

Events surrounding end of life are poorly understood, leaving many Americans to struggle with this event. The dramatic increase in the number of older adults facing the need for end-of-life care warrants development of a research infrastructure and resources to enhance care for patients and their families.

Ambiguity surrounding the definition of end-of-life hinders the development of science, delivery of care, and communication between patients and providers, while current end-of-life care includes some untested interventions that need to be validated. Subgroups of race, ethnicity, culture, gender and age groups experience end-of-life care differently, and these differences remain poorly understood. Valid measures exist for some aspects of end of life; however, measures have not been used consistently or validated in diverse settings or with diverse groups.

End-of-life care is often fragmented among providers and provider settings, leading to a lack of continuity of care and impeding the ability to provide high-quality, multiprofessional care. Enhanced communication among patients, families, and providers is crucial to high-quality end-of-life care.

The Society has supported efforts in this area by offering the Compassionate Care in the ICU videos and DVDs. Also “ICU Issues and Answers” brochures are available from SCCM. To order these materials, visit SCCM’s Web site at www.sccm.org or call Customer Service at +1 847 827-2906.

“The SCCM videos and brochures can be a valuable aid in educating families, healthcare workers, and physicians in the complex issues of end-of-life care,” Dr. Ward said.