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What It Feels Like to Live and Die on Prolonged Life Support

  • Justin Engleka

In recent years, medical technologies and therapies have advanced to the point where the ability to sustain life is unprecedented. In intensive care units (ICUs) around the world, advanced medical therapies are saving lives every day. Many patients who receive intensive care do recover and are able to lead fruitful, productive lives. However, a large majority of patients treated in ICUs are chronically or terminally ill and may not return to their prehospital baselines of function and quality of life.1 A significant percentage of those patients will not even survive their hospitalization. In essence, our own medical advancements have also created a conundrum that requires more attention. Patients, families, and clinicians are facing many ethical, moral, and financial decisions with regard to therapies that prolong life. Until recently, there has not been much attention focused on the decisions that patients make in regard to proceeding with life-prolonging therapies indefinitely. There is, however, a body of literature on patients' preferences and lived experiences who survive their ICU stay.1–4 Due to the fact that we cannot evaluate patients' experiences after they have died, we are left with applying some of those lived experiences from patients who are able to tell about them. This chapter will discuss the experiences of patients who live and die on life support.

Keywords

Mechanical Ventilation Sleep Quality Life Support Prolonged Mechanical Ventilation Medical Advancement 
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.

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References

  1. 1.
    Mendelsohn AB, Chelluri L. Interviews with intensive care unit survivors: assessing post-intensive care quality of life and patients’ preferences regarding intensive care and mechanical ventilation. Crit Care Med 2003;31:400–406.CrossRefGoogle Scholar
  2. 2.
    Mendelsohn AB, Belle SH, et al. How patients feel about prolonged mechanical ventilation 1 year later. Crit Care Med 2002;30:1439–1445.CrossRefPubMedGoogle Scholar
  3. 3.
    Fakhry SM, Kercher KW, Rutledge R. Survival, quality of life, and charges in critically ill surgical patients requiring prolonged ICU stays. J Trauma 1996;41:999–1007.CrossRefPubMedGoogle Scholar
  4. 4.
    Douglas SL, Daly BJ, Gordon N, Brennan PF. Survival and quality of life: short-term versus long-term ventilator patients. Crit Care Med 2002;30:2655–2662.CrossRefPubMedGoogle Scholar
  5. 5.
    WHOQOL Group: The World Health Organization Quality of Life Assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995;41:1403–1409.Google Scholar
  6. 6.
    Nasraway SA, Button GJ, Rand WM, Hudson-Jinks T, Gustafson M. Survivors of catastrophic illness: outcome after direct transfer from intensive care to extended care facilities. Crit Care Med 2000;28:19–25.CrossRefPubMedGoogle Scholar
  7. 7.
    Chatila W, Kreimer DT, Criner GJ. Quality of life in survivors of prolonged ventilatory support. Crit Care Med 2001;29:737–742.CrossRefPubMedGoogle Scholar
  8. 8.
    Danis M, Patrick DL, Southerland LI, et al. Patients’ and families’ preferences for medical intensive care. JAMA 1988;260:797–802.CrossRefPubMedGoogle Scholar
  9. 9.
    Everhart MA, Perlman RA. Stability of patient preferences regarding life-sustaining treatments. Chest 1990;97:159–164.CrossRefPubMedGoogle Scholar
  10. 10.
    Rosenfeld KE, Wenger NS, Phillips RS, et al. Factors associated with change in resuscitation preference of seriously ill hospitalized patients: the SUPPORT Investigators; Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Arch Intern Med 1996;156:1558–1564.CrossRefPubMedGoogle Scholar
  11. 11.
    Stapleton RD, Nielsen EL, Engleberg RA, Patrick DL, Curtis R. Association of depression and life-sustaining treatment preferences in patients with COPD. Chest 2005;127:328–334.CrossRefPubMedGoogle Scholar
  12. 12.
    Thomas LA. Clinical management of stressors perceived by patients on mechanical ventilation. Adv Pract Acute Crit Care 2003;14:73–81.CrossRefGoogle Scholar
  13. 13.
    Bergbom-Engberg I, Haljamae H. Assessment of patients’ experience of discomforts during respirator therapy. Crit Care Med 1989;17:1068–1072.PubMedCrossRefGoogle Scholar
  14. 14.
    Rotondi AJ, Chelluri L, et al. Patients’ recollections of stressful experiences while receiving prolonged mechanical ventilation in an intensive care unit. Crit Care Med 2002;30:746–752.CrossRefPubMedGoogle Scholar
  15. 15.
    Parthasarathy S. Sleep during mechanical ventilation. Curr Opin Pulm Med 2004;10:489–494.CrossRefPubMedGoogle Scholar
  16. 16.
    Cooper AB, Thornley KS, Young GB, et al. Sleep in critically ill patients requiring mechanical ventilation. Chest 2000;117:809–818.CrossRefPubMedGoogle Scholar
  17. 17.
    Freedman NS, Kotzer N, Schwab RJ. Patient perception of sleep quality and etiology of sleep disruption in the intensive care unit. Am J Respir Crit Care Med 1999;159:1155–1162.PubMedGoogle Scholar
  18. 18.
    Cook DJ, Meade MO, Perry AG. Qualitative studies on the patient’s experience of weaning from mechanical ventilation. Chest 2001;120:469S–473S.CrossRefPubMedGoogle Scholar
  19. 19.
    Lowry LW, Anderson B. Neuman’s framework and ventilator dependency: a pilot study. Nurs Sci Q 1993;6:195–200.CrossRefPubMedGoogle Scholar
  20. 20.
    Jablonski RS. The experience of being mechanically ventilated. Qual Health Res 1994;4:186–207.CrossRefGoogle Scholar
  21. 21.
    Jenny J, Logan J. Caring and comfort metaphors used by patients in critical care. J Nurs Scholarsh 1996;28:349–352.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2008

Authors and Affiliations

  • Justin Engleka
    • 1
  1. 1.Director of Professional Services, Cedars Community HospiceMonroevilleUSA

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