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Modules:

  • 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
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    Back to Introduction and Background
    Models for Care

    Models for Care

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

    Models for Care

    • We have defined suffering and built a conceptual framework for its relief and for the enhancement of quality of life. Nevertheless, health care institutions are critically important to our system of care
    • It is now widely recognized that cognitive information such as that covered in this curriculum is necessary, but not sufficient, to deliver good end-of-life care to our patients
      • Pernicious and sometimes perverse systems of care have developed that reinforce the status quo

      • Our current systems of health care were not conceived within a comprehensive framework for relieving suffering

      • As different studies have demonstrated, current systems may, in fact, promote suffering, particularly for those who are near the end of life
    • Consequently, clinicians must often be creative in meeting the broad needs of their dying patients
      • Because physicians remain a key advocate for patients and their families within the health care system, you may be an agent for change within the health care systems in which you work

      • Urge yourself and your colleagues to insist on these elements for your patients. It is what you will want for yourself and your family when you need care
    • An approach is developed for fostering health care systems that work well for dying patients. To prepare for this, it is important to understand the concept of palliative care
    • The sections below cover the following essential topics:

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    What is Palliative Care?

    • Various groups have defined palliative care in diverse but related ways. Each of the proposed definitions has in common the focus on relieving suffering and improving quality of life
    • All of the definitions stress 2 important features:
      • The multifaceted, multidimensional nature of the experience of living with an acknowledged time-limiting illness

      • The priority of working as a team to achieve the relief of suffering and facilitate the enhancement of life
    • The importance of supporting the family and patient as a unit is clear
    • An issue that continues to be debated has been whether the term palliative care should refer to a discrete period at the end of life, or whether it is a concept that is relevant wherever suffering accompanies illness

    Palliative Care–Definition 1

        "Palliative care seeks to prevent, relieve, reduce or soothe the symptoms of disease or disorder without effecting a cure… Palliative care in this broad sense is not restricted to those who are dying or those enrolled in hospice programs… It attends closely to the emotional, spiritual, and practical needs and goals of patients and those close to them."
                    Institute of Medicine 1998

    Palliative Care–Definition 2

        "The active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems, is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with anti-cancer treatment."
                    WHO 1990

    Palliative Care–Expanded Definition

      • Affirms life and regards dying as a normal process
      • Neither hastens nor postpones death
      • Provides relief from pain and other distressing symptoms
      • Integrates the psychological and spiritual care, fostering opportunities to grow
      • Offers an interdisciplinary team to help patients live as actively as possible until death
      • Offers a support system for the family during the patient’s illness and their own bereavement
                    WHO 1990
    • Some have depicted a continuum of care graphically, showing how disease-modifying therapy with curative, life-prolonging or palliative intent
      • Wanes as the illness progresses toward the end of a person’s life

      • Tapers to nonexistence as active dying begins in the last hours of life
    • Comfort-oriented symptom control and supportive care increase over time, maximizing as dying culminates in death. Often people receive this care through a hospice program
    • Anticipatory grief over many different losses begins before death
    • Bereavement continues for some time after death
    • Palliative care provides for all 3 phases for the family as well as for the patient

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    What is Hospice?

    History of the Hospice Movement

    • In the 19th century, hospice was a term to describe places where the dying could be cared for. They were generally run by religious orders
    • In a remarkable development from listening to first 1 patient, then many patients, Cicely Saunders founded St Christopher’s Hospice south of London, England, as a new kind of hospice
      • It was a place where a team of professionals in a single institution pursues the medical, emotional, social, and spiritual care of patients and families

      • Most importantly, it is an academic hospice, where education and research are pursued simultaneously with patient care
    • What we now generally term palliative care has grown out of, and includes, hospice care
    • In the short 30 years since the founding of St Christopher’s, what has been called the hospice movement developed on the fringes of institutional medicine
    • The response from institutional medicine was perhaps understandable—no conventional system likes to be challenged by a "movement" that is critical of the mainstream
    • Nevertheless, in the US, it has developed widely, primarily as programs of care for patients at home
      • The Health Care Financing Administration (HCFA) reported in 1994 that there were:

        • 1682 Medicare-certified US hospices
        • Serving nearly 20% of patients dying in the US

      • Many more have sprung up since then

      • The fruits of this movement are receiving considerable and well-deserved recognition

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    Hospice in the U.S.

    In the United States, the single word hospice is used to describe 4 different concepts:

    1. A site of care for the dying

    • Free-standing facility
    • Dedicated unit within a hospital or nursing home

    2. An organization or program

    • Coordinates and/or provides care to dying patients and loved ones
    • Operates in a variety of settings but usually focused on the patient’s home

    3. An approach or philosophy of care

    • An approach to care that is integrated into all manner of care sites and practices, including intensive care units if necessary
    • In this sense it is synonymous with palliative care

    4. A system of reimbursement

    • Benefit available to Medicare beneficiaries
      • Subject to the rules and regulations promulgated by HCFA to govern that federal program

      • Unfortunately, the use of a single term for all of these meanings has led to some confusion
    • For many patients, the term still means a place to go to die
    • For many physicians, the term hospice means a poorly understood community-based program into which a patient disappears after the physician signs a form certifying a prognosis of less than 6 months
    • These misconceptions persist even though the majority of patients enrolled in hospice programs live in their own homes until they die, because that is where they want to die
      • Surveys of the American public indicate that, if they knew they had a life-threatening illness, more than 80% want to die at home
    • It is incumbent upon all physicians to understand the concepts, as well as the details, so that their patients get the best possible care. Just as physicians work with their local hospitals, nursing homes, and other sites where health care is delivered, so physicians need to understand and work with their local hospice agencies so that the best possible care is administered

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    Standards for Hospice and Palliative Care

    The hospice industry in the US is regulated by standards and guidelines promulgated by HCFA and measured and regulated by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). These standards may also be applied to palliative care. These standards and guidelines cover the following principles:

    Access to Care

    • Hospice agencies cannot always provide care to all comers, but the obligation to care for the dying is such that turning patients away is intolerably difficult for many of them
    • The best hospices have tended to expand rather than limit access
    • Oregon is currently aiming for universal access to hospice care
    • Medicare benefits are not panoramic and should be well understood if you are to provide the best benefits available to patients who need them

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    Informed Choices

    • Delivery of care should meet the patient and family expectations as much as possible
    • Relevant expectations include:
      • Having access to services
      • Being informed and in control of treatments to relieve pain and other physical symptoms
      • Receiving psychological, social, and spiritual support
    • Patients will be treated with the family as a unit of care with a right to:
      • Participate in choice of settings
      • Choose among options for interventions including referrals for intervention
      • Have adequate information sharing and confidentiality from other parties
      • Have absence of discrimination
    • Bereavement and grief support for survivors will continue even after the death

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    Symptom Management and Support

    • Symptom management, mental and spiritual health, and social support often require different kinds of programs that were not anticipated when the Medicare hospice legislation was written in 1982
    • Many hospices have worked with their communities, hospitals, and physicians to develop programs that stand outside the Medicare-regulated hospice delivery model in order to meet the needs of patients and families
    • These have included palliative care units, bridge programs, and the like

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    Grief and Bereavement Support

    • Support of the patient with anticipatory grief or grief over lost function
    • Support of the family for some time after bereavement

    Transfer Options, Continuity of Care

    • Sometimes patients, with their families and physicians, decide that medical interventions that require hospitalization in an acute care facility are needed; transfer from home or a hospice facility is necessary
    • This is possible without jeopardizing the patient’s place in hospice
    • As far as possible, continuity of providers between settings should be available

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    Evaluation, Research, and Education

    • Hospice care is a mature enough field that there is a responsibility for systematic evaluation, research, and education of incoming professionals in the same way that we are introduced to the rest of the spectrum of health care
    • Numerous committees, commissions, professional associations, and agencies are working with the nation’s medical schools and graduate and postgraduate programs to be sure that physicians are well-educated in:
      • Their role in palliative care
      • The way in which they can use hospice to promote best end-of-life care for their patients
    • Physicians are urged to support those developments, as well as the initiatives to critically study best practices so that the entire system may improve

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    Making Hospice a Routine Aspect of Medical Care

    • It is now up to us in the medical mainstream to make use of hospice as a routine part of medical care in the US
    • Hospice should no longer be viewed as an alternative to standard care. Rather it represents an important resource in the completion of good medical care
    • The challenge is to do this without losing the quality and safe personal touch of smaller systems of care
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