Improving end-of-life experience and care in the community: a conceptual framework.

End-of-life research and interventions have mostly focused on patients and family. There are compelling reasons for studying end-of-life experience and care from a community perspective. "Whole community" approaches to end-of-life care have been endorsed by the Institute of Medicine Committee on Care at End of Life. Building on the model developed by Stewart and colleagues, which integrates quality of life and quality of health indicators, a conceptual framework is presented that describes pertinent whole-community characteristics, structures, processes, and outcomes. The framework offers a map for whole-community research, intervention, and evaluation with the goal of changing the community culture related to life's end and thereby improving the quality of life for dying people and their families.

End-of-life care: a public health crisis and an opportunity for managed care.

American society is failing to provide humane care for people who are dying. Unnecessary physical suffering continues even in our most prestigious institutions, and the enormous burden on family caregivers remains unrecognized. The cost of health services and burdensome regulations remain major barriers to improving the quality of care. Healthcare planners and policy makers are gradually awakening to the realities of an increasingly older population and a looming labor shortage of qualified paid caregivers. Several features of palliative care render it attractive within managed care. Evidence is emerging that palliative care, focused on meticulous prospective care planning and coordination, delivers high quality and cost-effective end-of-life care. Innovative demonstration projects around the country are exploring models for integrating palliative care within the routine operational processes and protocols of health systems and are providing examples of feasible "best practices" crucial for raising public expectations and framing possible solutions for policymakers and planners. Ultimately, it will be a marketing asset for a managed care organization to be known as a center of excellence in palliative care, and in some markets it will be a necessity. The goals of managed care and palliative care are already well aligned, joint efforts among clinicians, provider institutions, insurers, and employee health benefit managers can address the needs and preferences of dying patients and families, while increasing public trust in managed care.

Completing the continuum of cancer care: integrating life-prolongation and palliation.

Cancer care extends from diagnosis through the late stages of advanced illness as patients confront dying and their families cope with caregiving and grief. Palliative care is a rapidly developing area of clinical focus that offers valuable services to patients in terms of symptom management and adjustment to illness, including issues of life completion and life closure. It is often appropriate to offer certain elements of palliative care early in the course of illness. As disease progresses, physical comfort and enhancing quality of life increasingly become primary goals of cancer care. Specialized palliative care programs, epitomized by hospice, are invaluable resources for patients with far-advanced illness and their families. Current regulations and prevailing payment structures limit access to and the scope of hospice services and highlight the need for innovative models of delivering and financing palliative care.

Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine.

When provided by a skilled, multidisciplinary team, palliative care is highly effective at addressing the physical, psychological, social, and spiritual needs of dying patients and their families. However, some patients who have witnessed harsh death want reassurance that they can escape if their suffering becomes intolerable. In addition, a small percentage of terminally ill patients receiving comprehensive care reach a point at which their suffering becomes severe and unacceptable despite unrestrained palliative efforts; some of these patients request that death be hastened. This paper presents terminal sedation and voluntary refusal of hydration and nutrition as potential last resorts that can be used to address the needs of such patients. These two practices allow clinicians to address a much wider range of intractable end-of-life suffering than physician-assisted suicide (even if it were legal) and can also provide alternatives for patients, families, and clinicians who are morally opposed to physician-assisted suicide. This paper will define the two practices, distinguish them from more standard palliative care interventions and from physician-assisted suicide, illustrate them with a real clinical scenario, provide potential guidelines and practicalities, and explore their moral and legal status. Although medicine cannot sanitize dying or provide perfect answers for all challenging end-of-life clinical problems, terminal sedation and voluntary refusal of hydration and nutrition substantially increase patients' choices at this inherently challenging time.

Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness.

Despite the universality of dying, research has not focused on developing conceptual models and measurement tools for examining the quality of care and quality of life of dying patients and their loved ones. We present here a vision and research agenda for the development of a Tool Kit of Instruments to Measure End of Life Care (TIME). Instruments for inclusion in the eventual "Tool Kit" should be patient-focused and family-centered, clinically meaningful, administratively manageable, and psychometrically sound. Prioritizing domains to measure quality of care should be based on consumer input and synergistic with ongoing efforts to formulate guidelines and standards of care. For this vulnerable population, research is needed regarding the timing and sources of data collection. In order to achieve maximal benefit, ultimately measurement tools must be incorporated into existing measurement systems and consideration be given to generating informative reports which leads to institutional action to improve the quality of care.

Conceptual models and the outcomes of caring.

Conceptual models and the taxonomies associated with them are inherent tools of goal-directed activity. Conceptual models partition reality, discerning differences within a phenomenologic continuum; a process that is a fundamental requisite for measurement. This paper presents theoretical observations regarding the influence of conceptual models on goal-directed endeavors and explores specific implications for outcome measurement in palliative care. The dominant model of end-of-life care is the problem-based model of adult medicine. In clinical orientation, hospice and palliative care bear strong similarities to a pediatric and family medical model for early childhood care. This essay examines salient features of a conceptual model for palliative care that draws on a life-cycle or developmental model of human experience in critical transitions and explores application of this model to palliative care.

Measuring quality of life for patients with terminal illness: the Missoula-VITAS quality of life index.

Quality of life (QOL) is an important outcome measure in caring for terminally ill patients. The Missoula-VITAS Quality of Life index (MVQOLI) has been developed to provide a measure of quality of life that is meaningful to both clinicians and patients. Unique features of the instrument include its focus on the terminal phase of life, the item structure and a scoring system that allows the weighting of each dimension of QOL by the respondent, and the subjective wording of the items that allows respondents to interpret the measured elements according to their own experience. The validity and reliability of the patient-reported survey instrument were tested by administering the 25-item questionnaire to 257 patients in 10 community-based hospices. Participants were incurably ill with predicted survival of six months or less. Exclusion criteria included inability to communicate, dementia, or psychological symptoms that might be intensified by completing the index. Reliability and validity of the new index were examined using standard statistical and psychometrical analyses. The MVQOLI demonstrated internal consistency (Cronbach's alpha = 0.77). MVQOLI total scores were correlated with scores on the Multidimensional Quality of Life Scale--Cancer 2 and with patient-reported global QOL ratings. MVQOLI scores did not correlate with observer-rated functional status scores indicating divergent validity. The MVQOLI could be completed by patients of varied educational level, age, functional status, and length of time with a terminal illness. The instrument is designed to contribute to the task of planning care by evaluating patient-identified sources of distress, strength and satisfaction, including issues of life closure. This information contributes to crafting highly specific interventions. Further studies are necessary to determine the usefulness of the instrument in measuring outcomes of end-of-life care in nonhospice settings, and for racial and diagnostic groups under-represented in this sample.

The nature of suffering and the nature of opportunity at the end of life.

Encountering a patient who is suffering in the midst of terminal illness is an all-too-common occurrence for clinicians who care for the elderly. This article explores the personal experience of suffering in the context of life-limiting illness. The concept of personhood is used to illuminate the nature of suffering. Clinical observation documents that some persons experience a subjectively heightened sense of well-being as they die. The concept of personhood and the model of life-long human development is applied to the explication of this apparent paradox, enabling an understanding of the nature of opportunity at the end of life.