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Suggested Citation:"Appendix G." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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G Excerpts from Medical Guidelines for Determining Prognosis in Selected NonCancer Diseases*

General Guidelines for Determining Prognosis

The following parameters may be used to help determine whether a patient is appropriate for hospice care and/or for the Medicare/Medicaid Hospice Benefit. These General Guidelines apply to all patients referred to hospice. However, they may be specifically applied to patients who do not fall under any of the specific diagnostic categories for which disease-specific Guidelines have been written. An example might be the elderly debilitated patient whose intake of food and fluid has declined to the point where weight loss has become significant, although no specific disease predominates in the clinical picture.

The patient should meet all of the following criteria:

  1. The patient's condition is life-limiting, and the patient and/or family have been informed of this determination.
    1. A "life-limiting condition" may be due to a specific diagnosis, a combination of diseases, or there may be no specific diagnosis defined.

*  

Stuart, B., Alexander, K., Arenella, C. et al. Medical Guidelines for Determining Prognosis in Selected NonCancer Diseases, 2d ed. Washington, D.C.: National Hospice Organization, 1996. Used with permission. NOTE: Citations and references to appendixes have been omitted.

Suggested Citation:"Appendix G." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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  1. The patient and/or family have elected treatment goals directed toward relief of symptoms, rather than cure of the underlying disease.
  2. The patient has either of the following:
    1. Documented clinical progression of disease, which may include:
      1. Progression of the primary disease process as listed in disease-specific criteria, as documented by serial physician assessment, laboratory, radiologic, or other studies.
      2. Multiple Emergency Department visits or inpatient hospitalizations over the prior six months.
      3. For homebound patients receiving home health services, nursing assessment may be documented.
      4. For patients who do not qualify under 1, 2 or 3, a recent decline in functional status may be documented.
        1. Functional decline should be recent, to distinguish patients who are terminal from those with reduced baseline functional status due to chronic illness. Clinical judgment is required for patients with a terminal condition and impaired status due to a different nonterminal disease; e.g., a patient chronically paraplegic from spinal cord injury who is recently diagnosed with cancer.
        2. Diminished function status may be documented by either:
          1. Karnofsy Performance Status of less than or equal to 50 percent, or
          2. Dependence in at least three of six Activities of Daily Living. "Activities of Daily Living" are:
            1. bathing
            2. dressing
            3. feeding
            4. transfers
            5. continence of urine and stool
            6. ability to ambulate independently to bathroom
Suggested Citation:"Appendix G." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×
  1. Documented recent impaired nutritional status related to the terminal process.
    1. Unintentional, progressive weight loss of greater than 10 percent over the prior six months.
    2. Serum albumin less than 2.5 gm/dl may be a helpful prognostic indicator, but should not be used in isolation from other factors in I–III above.

Medical Guidelines for Determining Prognosis: Dementia

This section is meant to assist in determining whether a patient with end-stage dementia is appropriate for hospice care and/or eligible for the Medicare/Medicaid Hospice Benefit. Although dementia shortens life independent of culture or ethnicity, prediction of six-month mortality is challenging. Severity of dementia alone correlates with poor survival in studies of institutionalized and outpatients, but patients with very advanced dementia can survive for long periods with meticulous care as long as they do not develop lethal complications. Death usually occurs, in fact, as a result of comorbid conditions.

The term "dementia" refers here to chronic, primary, and progressive cognitive impairment of either the Alzheimer or multi-infarct type. Although most research on prognosis in dementia is done with Alzheimer's patients, the vascular (multi-infarct) dementias appear to progress to death more quickly. These guidelines do not refer to acute, potentially reversible, or secondary dementias, i.e., those due to drug intoxication, cancer, AIDS, major stroke, or heart, renal, or liver failure.

  1. Functional Assessment Staging
    1. Even severely demented patients may have a prognosis of up to two years. Survival time depends on variables such as the incidence of comorbidities and the comprehensiveness of care.
    2. The patient should be at or beyond Stage 7 of the Functional Assessment Staging Scale. The factors listed below should be understood explicitly since many patients do not progress in an orderly fashion through the substages of Stage 7.
Suggested Citation:"Appendix G." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×
  1. The patient should show all of the following characteristics:
    1. unable to ambulate without assistance.

      This is a critical factor. Recent data indicate that patients who retain the ability to ambulate independently do not tend to die within six months, even if all other criteria for advanced dementia are present.

    2. unable to dress without assistance.
    3. unable to bathe properly.
    4. urinary and fecal incontinence.
      1. occasionally or more frequently, over the past weeks.
      2. reported by knowledgeable informant or caregiver.
    5. unable to speak or communicate meaningfully.
      1. ability to speak is limited to approximately a half dozen or fewer intelligible and different words, in the course of an average day or in the course of an intensive interview.
  1. Presence of Medical Complications
    1. The presence of medical comorbid conditions of sufficient severity to warrant medical treatment, documented within the past year, whether or not the decision was made to treat the condition, decrease survival in advanced dementia.
    2. Comorbid conditions associated with dementia:
      1. aspiration pneumonia.
      2. pyelonephritis or other upper urinary tract infection.
      3. septicemia.
      4. decubitus ulcers, multiple, stage 3–4.
      5. fever recurrent after antibiotics.
Suggested Citation:"Appendix G." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×
  1. Difficulty swallowing food or refusal to eat, sufficiently severe that patient cannot maintain sufficient fluid and calorie intake to sustain life, with patient or surrogate refusing tube feedings or parenteral nutritional.
    1. Patients who are receiving tube feedings must have documented impaired nutritional status as indicated by:
      1. unintentional, progressive weight loss of greater than 10 percent over the prior six months.
      2. serum albumin less than 2.5 gm/dl may be a helpful prognostic indicator, but should not be used by itself.
Suggested Citation:"Appendix G." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
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Page 400
Suggested Citation:"Appendix G." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×
Page 401
Suggested Citation:"Appendix G." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×
Page 402
Suggested Citation:"Appendix G." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×
Page 403
Suggested Citation:"Appendix G." Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: The National Academies Press. doi: 10.17226/5801.
×
Page 404
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When the end of life makes its inevitable appearance, people should be able to expect reliable, humane, and effective caregiving. Yet too many dying people suffer unnecessarily. While an "overtreated" dying is feared, untreated pain or emotional abandonment are equally frightening.

Approaching Death reflects a wide-ranging effort to understand what we know about care at the end of life, what we have yet to learn, and what we know but do not adequately apply. It seeks to build understanding of what constitutes good care for the dying and offers recommendations to decisionmakers that address specific barriers to achieving good care.

This volume offers a profile of when, where, and how Americans die. It examines the dimensions of caring at the end of life:

  • Determining diagnosis and prognosis and communicating these to patient and family.
  • Establishing clinical and personal goals.
  • Matching physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. Approaching Death considers the dying experience in hospitals, nursing homes, and other settings and the role of interdisciplinary teams and managed care. It offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues such as assisted suicide. The book proposes how health professionals can become better prepared to care well for those who are dying and to understand that these are not patients for whom "nothing can be done."
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