End-of-Life Decisions

  • Sydney Morss DyEmail author
Part of the Cancer Drug Discovery and Development book series (CDD&D)


Although end-of-life decision making is critical for good oncology care, physicians often do not initiate discussions until the last days of life and do not use good communication skills and evidence-based techniques. Research on deficits in decision making has found that patients often misunderstand information the first time it is provided or may not be ready to hear bad news, and that physicians often omit information about the terminal illness and options other than chemotherapy. Physicians also often fail to use basic communication techniques to elicit and improve understanding. Research supports the effectiveness of a variety of interventions to improve communication and decision making for outcomes such as reducing the use of interventions with a low likelihood of benefit, increasing hospice length of stay, and decreasing families’ symptoms of bereavement. The widely used autonomy paradigm of presenting patients with options such as chemotherapy and allowing them to choose may not work well near the end of life. An evidence-based approach based on planning over time, a systematic approach to communication, and eliciting goals and values satisfactory to all involved in the decision-making process may be more appropriate. Using history-taking skills to explore patients’ and families’ emotion-laden statements about end of life care, and using a differential diagnosis approach when decision making does not occur smoothly or when conflict exists, can also be helpful in challenging situations.


End of life decisions Hospice Palliative care Communication Autonomy 


  1. 1.
    Wennberg JE, Fisher ES, Stukel TA, Skinner JS, Sharp SM, Bronner KK. 2004; Use of hospitals, physician visits, and hospice care during last six months of life among cohorts loyal to highly respected hospitals in the United States. Br Med J 328:607CrossRefGoogle Scholar
  2. 2.
    Prendergast TJ, Claessens MT, Luce JM. 1998; A national survey of end-of-life care for critically ill patients. Am J Respir Crit Care Med 158:1163–7PubMedGoogle Scholar
  3. 3.
    Prendergast TJ, Luce JM. 1997; Increasing incidence of withholding and withdrawal of life support from the critically ill. Am J Respir Crit Care Med 155:15–20PubMedGoogle Scholar
  4. 4.
    Han B, Remsburg RE, McAuley WJ,. et al. 2006; National trends in adult hospice use: 1991–1992 to 1999–2000. Health Aff 25:792–9CrossRefGoogle Scholar
  5. 5.
    Barnato AE, McClellan MB, Kagay CR,. et al. 2004; Trends in inpatient treatment intensity among medicare beneficiaries at the end of life. Health Serv Res 39:363–75PubMedCrossRefGoogle Scholar
  6. 6.
    Emanuel EJ, Young-Xu Y, Levinsky NG, Gazelle G, Saynina O, Ash AS. 2003Chemotherapy use among medicare beneficiaries at the end of life. Ann Intern Med ; 138:639–43PubMedGoogle Scholar
  7. 7.
    Earle CC, Neville BA, Landrum MB,. et al. 2004:Trends in the aggressiveness of cancer care near the end of life. J Clin Oncol 22:315–21PubMedCrossRefGoogle Scholar
  8. 8.
    Breen CM, Abernethy AP, Abbott KH, Tulsky JA. 2001; Conflict associated with decisions to limit life-sustaining treatment in intensive care units. J Gen Intern Med 16:283–9PubMedCrossRefGoogle Scholar
  9. 9.
    Zhang AY, Siminoff LA. 2003; Silence and cancer: Why do families and patients fail to communicate? Health Commun 15:415–29Google Scholar
  10. 10.
    Lorenz K, Lynn J, Morton S, et al. End-of-Life Care and Outcomes. Agency for Healthcare Research and Quality, Rockville, MD, 2004. Available at www.ahrq.govGoogle Scholar
  11. 11.
    Nolan MT. 2003; Could lack of clarity in written advance directives contribute to their ineffectiveness? A study of the content of written advance directives. Appl Nurs Res 16:65–9PubMedCrossRefGoogle Scholar
  12. 12.
    Doyle C, Crump M, Pintilie M, Oza AM. 2001Does palliative chemotherapy palliate? Evaluation of expectations, outcomes, and costs in women receiving chemotherapy for advanced ovarian cancer. J Clin Oncol ; 19:1266–74PubMedGoogle Scholar
  13. 13.
    Teno JM, Clarridge BR, Casey V,. et al. 2004; Family perspectives on end-of-life care at the last place of care. J Am Med Assoc 291:88–93CrossRefGoogle Scholar
  14. 14.
    Gattellari M, Voigt KJ, Butow PN, Tattersall MH. 2002; When the treatment goal is not cure: Are cancer patients equipped to make informed decisions? J Clin Oncol 20:503–13PubMedCrossRefGoogle Scholar
  15. 15.
    Rady MY, Johnson DJ. 2004Admission to intensive care unit at the end-of-life: Is it an informed decision? Palliative Med ; 18:705–11CrossRefGoogle Scholar
  16. 16.
    Maltoni M, Caraceni A, Brunelli C,. et al. 2005; Prognostic factors in advanced cancer patients: Evidence-based clinical recommendations – a study by the Steering Committee of the European Association for Palliative Care. J Clin Oncol 23:6240–8PubMedCrossRefGoogle Scholar
  17. 17.
    Christakis NA. 1999Death Foretold: Prophecy and Prognosis in Medical Care. University of Chicago Press,Chicago,Google Scholar
  18. 18.
    Glare P, Virik K, Jones M,. et al. 2003; A systematic review of physicians’ survival predictions in terminally ill cancer patients. Br Med J 327:195CrossRefGoogle Scholar
  19. 19.
    Lamont EB, Christakis NA. 2001; Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med 134:1096–105PubMedGoogle Scholar
  20. 20.
    Emanuel EJ, Fairclough DL, Wolfe P, Emanuel LL. 2004; Talking with terminally ill patients and their caregivers about death, dying, and bereavement: Is it stressful? Is it helpful? Arch Intern Med 164:1999–2004PubMedCrossRefGoogle Scholar
  21. 21.
    Casarett D, Crowley R, Stevenson C, Xie S, Teno J. 2005; Making difficult decisions about hospice enrollment: What do patients and families want to know? J Am Geriatr Soc 53:249–54PubMedCrossRefGoogle Scholar
  22. 22.
    Casarett D, Crowley RL, Hirschman KB. 2004; How should clinicians describe hospice to patients and families? J Am Geriatr Soc 52:1923–28PubMedCrossRefGoogle Scholar
  23. 23.
    Snyder CF, Dy SM, Hendricks DE,. et al. 2007; Asking the right questions: Investigating needs assessments and health-related quality-of-life questionnaires for use in oncology clinical practice. J Am Geriatr Soc 15:(9)1075–85Google Scholar
  24. 24.
    Smith DG, Wigton RS. 1987; Modeling decisions to use tube feeding in seriously ill patients. Arch Intern Med 147:1242–5PubMedCrossRefGoogle Scholar
  25. 25.
    Elasy T, Carey T, Hanson L,. et al. 1998; Gastrostomy use in the seriously ill. Perspectives of patients, families, physicians, and nurses. J Gen Int Med 13:(Suppl)108Google Scholar
  26. 26.
    Dy SM. 2006; Enteral and parenteral nutrition in terminally ill cancer patients: A review of the literature. Am J Hosp Palliat Care 23:369–77PubMedCrossRefGoogle Scholar
  27. 27.
    Azoulay E, Pochard F, Chevret S,et al. 2002; . Impact of a family information leaflet on effectiveness of information provided to family members of intensive care unit patients: A multicenter, prospective, randomized, controlled trial. Am J Respir Crit Care Med 165:(4)438–42PubMedGoogle Scholar
  28. 28.
    . Scott JT, Harmsen M, Prictor MJ, Entwistle VA, Sowden AJ, Watt I. Recordings or summaries of consultations for people with cancer. Cochrane Database Syst Rev 2003; 2:CD001539Google Scholar
  29. 29.
    Casarett D, Karlawish J, Morales K, Crowley R, Mirsch T, Asch DA. 2005; Improving the use of hospice services in nursing homes: a randomized controlled trial. J Am Med Assoc 294:211–7CrossRefGoogle Scholar
  30. 30.
    Schneiderman LJ, Gilmer T, Teetzel HD,. et al. 2003; Effect of ethics consultations on nonbeneficial life-sustaining treatments in the intensive care setting: A randomized controlled trial. J Am Med Assoc 290:1166–72CrossRefGoogle Scholar
  31. 31.
    Lautrette A, Darmon M, Megarbane B,. et al. 2007; A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med 356:469–78PubMedCrossRefGoogle Scholar
  32. 32.
    Lilly CM, De Meo DL, Sonna LA,. et al. 2000; An intensive communication intervention for the critically ill. Am J Med 109:469–75PubMedCrossRefGoogle Scholar
  33. 33.
    Ford Pitorak E, Beckham Armour M, Sivec HD. 2003; Project safe conduct integrates palliative goals into comprehensive cancer care. J Palliat Med 6:645–55PubMedCrossRefGoogle Scholar
  34. 34.
    Drought TS, Koenig BA. 2002; “Choice” in end-of-life decision making: Researching fact or fiction? Gerontologist 42:114–28PubMedCrossRefGoogle Scholar
  35. 35.
    Schneider CE. 1998The Practice of Autonomy: Patients, Doctors, and Medical Decisions. Oxford University Press, New York,Google Scholar
  36. 36.
    Nolan MT, Hughes M, Narendra DP, Sood JR, Terry PB, Astrow AB, Kub J, Thompson RE, Sulmasy DP. 2005; When patients lack capacity: the roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions. J Pain Symptom Manage 30:342–53PubMedCrossRefGoogle Scholar
  37. 37.
    Hawkins NA, Ditto PH, Danks JH, Smucker WD. 2005:Micromanaging death: Process preferences, values, and goals in end-of-life medical decision making. Gerontologist 45:107–17PubMedCrossRefGoogle Scholar
  38. 38.
    Lo B, Quill T, Tulsky J. 1999; Discussing palliative care with patients. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine. Ann Intern Med 130:744–9PubMedGoogle Scholar
  39. 39.
    Goold SD, Williams B, Arnold RM. 2000; Conflicts regarding decisions to limit treatment: a differential diagnosis. J Am Med Assoc 283:909–14CrossRefGoogle Scholar

Copyright information

© Humana Press, a part of Springer Science + Business Media, LLC 2009

Authors and Affiliations

  1. 1.Health Policy and ManagementOncology, and MedicineUSA

Personalised recommendations