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  • Introduction
  • 1. Advance Care Planning
  • 2. Communicating Bad News
  • 3. Whole Patient Assessment
  • 4. Pain Management
  • 5. Assisted Suicide Debate
  • 6. Anxiety, Delirium
  • 7. Goals of Care
  • 8. Sudden Illness
  • 9. Medical Futility
  • 10. Common Symptoms
  • 11. Withholding Treatment
  • 12. Last Hours of Living
  • 13. Cultural Issues
  • 14. Religion, Spirituality
  • 15. Legal Issues
  • 16. Social and Psychological
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  • Hospice Care
  • Clergy and Faith Communities
  • Additional Links
    Site Index
    Back to Introduction and Background
    Barriers to Good End of Life Care

    Models for Care
    Five Important Themes in End of Life Care
    Barriers to Good End of Life Care

    Barriers to Good End of Life Care

    There are 4 areas that we can highlight where barriers to good end of life care reside:

    Institutional Barriers

    • Health care institutions may or may not facilitate good end-of-life care
    • The cultures that develop within these institutions are complex and not easily changed
    • Although it is beyond the scope of this website to discuss these issues in detail, there are numerous projects and studies that aim to understand and change institutional practice so that good end-of-life care can be provided
    • Examples of institutional barriers are:
      • Policies that prohibit families from freely visiting dying patients
      • Policies that insist that a dead body be moved within 4 hours of death
      • Absence of pain and symptom management services
      • Absence of policies that promote adequate assessment and reporting
    • Change may be best accomplished by identifying and targeting small components of the institution for change



    • There are a host of regulations at many levels that inhibit good end-of-life care
      • Institutional
      • Local
      • Regional
      • State
      • National
    • Triplicate prescription programs for Schedule II drugs have been demonstrated to:
      • Limit the prescription of appropriate analgesics
      • Foster the prescription of inappropriate analgesics
    • Existing regulations have led to a pervasive fear of prosecution of physicians for prescribing medications aimed at the relief of pain and symptoms
    • Institutional policies and regulations may prohibit a patient from refusing a feeding tube or insisting on moving to another institution to die in order to avoid state scrutiny of their care
    • Federal regulations are now restricting access of patients in advanced phases of illness to home care and hospice services at precisely the same time that there is increased focus on the need for these services



    • Health care system administrators and physicians are influenced by the financial conditions attached to their activities
    • High-technology care that is procedurally based remains the most remunerative
    • Cognitive and counseling activities remain the least remunerative
    • Yet, palliative and hospice care relies heavily on the latter skills
    • Despite the well-documented gaps in contemporary end-of-life care, current utilization review guides are silent on the legitimate needs of patients and families near the end of life
    • Some commercial insurers have gone so far as to insist that any patient with a do-not-resuscitate order must, by definition, not need to be in an acute care setting


    Individual Attitudes

    • Finally, attitudes toward end-of-life care may represent one of the biggest barriers
    • There are still patients, families, and professionals who feel there is "nothing more to do" for a patient who has a life-threatening prognosis
    • Society in general still tends to shun the dying and deny attention to the suffering
    • It is difficult to be around death, even for professionals, and many walk away in the face of unrelieved suffering
    • The first step to improving any problem is to acknowledge the problem exists. If it is deemed unimportant, then no progress can be expected


    Health Care Professionals’ Personal Support Needs

    Patients are asking health care professionals to do better

    • Unfortunately, physicians are among the individuals thought most likely to abandon care as the prognosis declines, or so patients, other professionals, and the public perceive
    • Perhaps it is because of our extra obligation as physicians to stay present and to continue care
    • Either way, we must address this widely acknowledged duty to do better

    Health care professionals need a forum for candid discussion of experiences

    • Many health care professionals who engage in extensive end-of-life care find it important to provide for their own personal care
    • This may occur in a variety of settings:
      • Professional counseling
      • Religious or spiritual learning
      • Supportive personal or collegial relationships where experiences can be candidly discussed

    Transference is powerful

    • In order to be comfortable around the dying it may be necessary to be comfortable with the fact of our own eventual mortality
    • There is not one health care professional, indeed not one person, who does not have a reaction to the fact of mortality and to our own mortality as a part of that
    • The connection between the feelings of a patient and the feelings of a professional are known to be profound; transference is an entire area of inquiry in psychology and psychiatry
    • Knowing our own emotional relationship to suffering and dying and maximizing the health of that relationship are essential

    Professional distance and empathic closeness must balance

    • Finding the correct balance between engaging in the patient’s experience and keeping a professional distance is the key to empathic and effective end-of-life care

    Health care professionals working with persons at the end of life must be self-aware

    • In assessing how to best support each one of our own personal abilities to provide care to patients facing the end of life, consider for yourself how you would characterize your own responses to patients who were suffering and dying in your past personal and professional experiences
      • Most health care professionals, even the best, will be able to identify negative emotions

      • Most will also be able to identify positive emotions
    • Some of the health care professionals who provide model care to patients near the end of life find the experience deeply gratifying
    • In considering yourself and your end-of-life care, ask yourself how you would characterize your own negative and positive responses to dying patients and their families


    Confronting Barriers

    • If we are to advocate for the best possible care for our patients, we need a clear idea of the barriers that must be overcome to get there
    • Experience has shown time and again that barriers can be confronted and resolved
    • In order to implement change, it helps to consider possible plans with colleagues
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