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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
  • More About:

  • Hospice Care
  • Clergy and Faith Communities
  • Additional Links
    Site Index
    Back to Introduction and Background
    Role of Hospice, Palliative Care

    Role of Hospice, Palliative Care

    Conceptions of Suffering
    Elements of End of Life Experience

    Role of Hospice, Palliative Care

    Growth of Hospice Agencies in the United States

    • In order to help families care for patients with advanced life-threatening illness at home, hospice agencies started to appear across the United States during the late 1970s
    • While volunteers and philanthropy initially ran them, hospices received a boost in 1982 when the federal government began reimbursing hospice care for Medicare beneficiaries with a prognosis of less than 6 months
    • Subsequent decades have seen a marked growth in the number of agencies operating in the United States


    Hospice Care Underutilized

    • However, even with this growth, hospices still care for only a minority of dying patients:
      • 11% of all deaths in the US in 1993 occurred in hospice settings

      • This figure rose to 17% in 1995

      • Of those patients dying of cancer in the US, only about 40% are ever referred to a hospice agency. There is significant regional variation, however

        • For example, 35% of all dying patients in Florida die with hospice care
        • The figure is 40% in Oregon

      • The situation is similar for both adult and pediatric patients
    • Although the numbers of patients who die while being cared for by a hospice has been rising slowly, patients generally do not spend enough time in these programs to experience all of the potential benefits
      • In 1995...
        • The median length of hospice stay was 36 days
        • Nearly one fifth of patients died within a week of admission

      • By 1998, the situation was worse. For a variety of reasons, the median length of stay had dropped to less than 20 days


    Efforts to Expand Hospice Care

    • More recently, palliative care programs and consult services have been developing across the US to provide the expertise and standards of practice developed by hospice to patients who have needs for symptom control and supportive care earlier in their illness
    • These services are targeted to improve the quality of patients’ lives while they fight their disease
    • Anecdotal experience suggests that good palliative care may help to increase life expectancy in certain patients


    Gaps Between Reality and Desire

    • When the current status of care for the dying is summarized, the large gap between the way Americans currently live with life-threatening illness and die, and the way they would like to experience the end of their lives at home becomes apparent
    • With the shift to fight death "the enemy" at all cost
      • Treatments have frequently become excessively aggressive
      • Symptoms have not been controlled
      • Patients have lost their independence
    • With the shift to care for very ill patients at home
      • Many families have not coped
      • Death far too frequently has occurred in institutions
    • While generalizations may be misleading for individual patients and families, they do help to illustrate the general culture of dying in the US and how far it is from the one that is desired by most Americans
    • The following table highlights common fears and desires related to death and dying that illustrate the gaps in end of life care in America today
    Gaps in End of Life Care
    Large gap between reality and desire
    Fears Desires
    Die on a machine  Die not on a ventilator 
    Die in discomfort  Die in comfort 
    Be a burden  Die with family/friends 
    Die in institution  Die at home 


    Health Professionals and End of Life Care: Public Expectations and Training Realities

    Public Expectations

    • Despite their concerns, and the general consensus that end of life care must improve, the public still maintains an optimistic attitude toward end-of-life care, and especially the role of their physician
    • In 1997, an AMA Public Opinion Survey asked, "Do you feel your doctor is open and able to help you discuss and plan for care in case of life-threatening illness?"
      • 74% responded "yes"
      • 14% responded "no"
      • 12% responded "don't know"
    • The results showed that the majority of Americans (74%) expect their physician to be confident and competent to provide them with care when they do develop a life-threatening illness


    Physician Training in End of Life Care

    • Until recently, formal education in end-of-life care has been absent from medical school and residency training
    • Most physicians feel ill equipped, if not fearful, to care for the dying, as illustrated by the words of Charles F. von Gunten, the EPEC Project Director and Endlink Co-Principal Investigator, reflecting on one of his early experiences with a dying patient:
          "They said there was ‘nothing to do’ for this young man who was ‘end stage.’ He was restless and short of breath; he couldn’t talk and looked terrified. I didn’t know what to do, so I patted him on the shoulder, said something inane and left. At 7 AM he died. The memory haunts me. I failed to care for him properly because I was ignorant"
    • When surveyed by the AMA in 1997–1998:
      • Only 4 of 126 US medical schools required a separate course in the care of the dying

      • While 121 schools reported they covered the topic as part of a required course, the statistic may be misleading

        • It is not at all clear what is meant by 'covered'—a lecture, a seminar, or a required reading
    • It is certainly clear is that there is still no standardization of education in end-of-life care in medical schools at any level of training
    • Without any training, how can physicians become confident and competent in end-of-life care?


    Barriers to End of Life Care

    There are many other reasons why end-of-life care in the United States is not what it could or should be:

    1. Lack of Acknowledgement of Importance

    • Frequently, neither the public nor health care providers acknowledge that end-of-life care is important
    • Palliative care is often introduced too late to be effective
    • Funding is frequently inadequate to deliver quality palliative care

    2. Misinformed Fears

    • Fears of addiction
    • Exaggerated risks of adverse effects
    • Restrictive legislation

    3. Health Professional Discomfort

    • Discomfort with communicating bad news and prognosis
    • Frequent misunderstanding

    4. Lack of Skills

    • Lack of skills to assist patients and families to negotiate clear goals of care and treatment priorities
    • Lack of understanding of patients’ rights (or parents’ rights if the patient is a child) to decline or withdraw treatment
    • Excessive futile intervention may result

    5. Personal Factors

    • Personal fears, fantasies, worries, and lack of confidence around issues of death and dying are prevalent
    • Many physicians avoid dealing with patients who are dying because of these issues

    Separating Suffering from End-of-Life

    • Experiences toward the end of life are so closely associated in peoples' minds with suffering that it is hard to use one term without assuming the meaning of both
    • The aim of quality end-of-life care is, however, to avoid needless suffering in order to permit experiences that will have positive meaning
    • For this to happen it is necessary for everyone involved to understand something about:
      • Suffering
      • Other elements of experience when facing the end of life
      • The types of intervention that can be helpful
      • The resources and teamwork it takes to make these interventions available

    Medical Training Fails to Address Suffering

    • As Eric Cassell has written so persuasively, the public imagines that we as a medical profession study the issue of suffering in medical school. Indeed, they expect us to be experts at the relief of suffering
    • As he pointed out in a remarkable paper published in the New England Journal of Medicine in 1982, the public would be shocked to learn that this subject doesn’t get much attention in medical training
    • Conceptual frameworks, approaches for investigating and understanding suffering, and approaches for intervention to relieve suffering have been neglected in the training of physicians
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