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Measuring Quality of Life at the End of Life

  • L. A. Roscoe
  • D. D. Schocken

Abstract:

For patients near the  end of life, quality of life becomes an even more central goal of care than for patients for whom recovery is expected. While patient quality of life is essentially an individual matter and a reflection of a particular patient’s goals, experiences, values and preferences for treatment, there is considerable agreement about what domains are relevant. Domains that comprise patient quality of life at the end of life generally include: trusting one’s physician, avoiding a prolonged dying experience, attaining a sense of closure, avoiding being a burden to family members, managing pain and other symptoms, and maintaining open communication.

The characteristics of quality of life measures useful in this context are described, and seven quality of life measures with demonstrated reliability and validity in the end of life context are discussed. The domains that comprise quality of care at the end of life overlap the domains of quality of life; thus three measures of quality of care at the end of life are also described. Since patients nearing the end of life are often debilitated and unable to respond to measurement instruments, the benefits and risks of using  proxy data for patient quality of life measurements are summarized. The influence of  hospice care on patient quality of life is summarized, as well as the difficulties of conducting research in this patient population. The chapter concludes with suggested directions for future research.

Keywords

Family Caregiver Patient Quality Hospice Care Palliative Care Patient Spiritual Issue 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.

List of Abbreviations:

HIPAA

Health Insurance Portability and Accountability Act

HQLI

Hospice Quality of Life Index

MQLS

McMaster Quality of Life Scale

MQOL

McGill Quality of Life Questionnaire

MQOL-CSF

McGill Quality of Life Questionnaire-Cardiff Short Form

MVQOLI

Missoula-VITAS Quality of Life Index

QODD

Quality of Dying and Death

TIME

Toolkit of Instruments to Measure End of Life Care

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© Springer Science+Business Media LLC 2010

Authors and Affiliations

  • L. A. Roscoe
  • D. D. Schocken

There are no affiliations available

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