Palliative Care-Medicine Wheel-body
Palliative Care [Pay-lee-A-tive]
(The "Body" of the Medicine Wheel)
Medicine WheelSpritualPhysicalEmotionalMental


This leaf gives a description of what "palliative" or comfort care includes. It also describes "symtom management" (what does it mean to manage cancer and/or cancer symptoms, such as with drugs like Thalidomide; Oxycotone; Gleevac), as part of this type of care.

Hospice

  • What it is and is not
    • It focuses on comfort and lessening of symptoms rather than cure, while integrating psychological and spiritual aspects of care. (Boughton Barbara. Facing the Future: Planning for a Good Death. Cure: Spring 2003; pp. 51)
    • Not all hospice care is the same
      • Some hospice care provides treatments like chemotherapy and radiation. This is likely when the chemo or radiation helps relieve symptoms or side effects. So the chemo or radiation is likely to improve your quality of life
      • Some healthcare providers feel that hospice care "should be available to anyone who needs it, including people who are still receiving curative treatment." (Linda Emanuel, MD, PhD, Director of Buehler Center on Aging at Northwestern University, Chicago, as quoted from Boughton Barbara. Facing the Future: Planning for a Good Death. Cure: Spring 2003; pp. 52)
  • It is not only
    • For rich people
    • For non-Natives
    • For Natives who live in urban areas

  • Benefits
    • Allows family members to be trained to perform limited medical procedures
    • Takes the pressure off of family members to be the nurse and can focus on being the child, parent, partner
    • Helps you and the family prepare for death and what may happen
    • Allows you to die at home (if desired) with family and friends and in familiar surroundings
    • Allows you to say good-bye to one another.
    • Allows time for an open discussion among you, the providers and your family about what goals are reasonable
    • Allows you to make your remaining time of value to you.

    "The people at hospice ... listen to me and comfort me..." (Boughton, Barbara. Facing the Future: Planning for a Good Death. Cure:Spring 2003; p. 51)

  • Disadvantages
    • It may take time and effort to organize hospice services in the home if you, the patient, want to remain at home.
    • There may be limited space in your home for the hospital bed or other necessary equipment.
    • Many Native families decide that a family member should do end-of-life care. However, this care needs several people to help with it. The Hospice workers have skills that can make you, the patient, more comfortable rather than in pain.

  • Common Myths and Facts about Hospice Care
    • click on a "MYTH" for the "FACT"
    • MYTH Most patients enter hospice care when they are within a few days of dying ... final days ...

    • MYTH Hospice care is more expensive than is hospital care.

    • MYTH Hospice care is only available from hospitals in the city.

    • MYTH Most medical schools train physicians about helpful information for end-of-life care.

    • MYTH You cannot get pain relief medication if you are in hospice care.

    • MYTH For most people the physical process of dying is painful.

    • MYTH Hospice Care is only available in the cities.
  • What is a "good death"?
    • A "good death" is one that allow you to:
      • Live with dignity
      • Live without pain
      • Live each day to the fullest
      • Have spiritual balance before you die
      • Have as many friends and family around you as you want
      • Resolve financial issues so as to not be a burden
      • Have clear communication between the provider and you about:
        • Medical issues
        • Symptom management
      • Involve family and friends in your decisions, if you want them involved
        (Boughton Barbara. Facing the Future: Planning for a Good Death. Cure: Spring 2003; pp. 52)

    • Many do not have good death. Some of the reasons follow:
      • Providers do not want to talk with you about end-of-life issues
      • You do not want the provider to talk with you about end-of-life issues
      • Your tribal cultural beliefs do not allow you to talk about dying with someone other than the family or the traditional Indian healer
      • Your family or friends do not want to hear about you dying
      • No end-of-life support services are available to you or your family where you live.

    • What is the difference between in-the-home care and hospice care?
      • In-the-home care may be to help you while you recover from your treatment, but you are not dying
      • In-the-home care is provided by caregivers who are not part of hospice and are non-medical people:
        • May be available for you when you need help with daily living but family is not around
        • When you are not dying, but you still need help with bathing, getting up, walking around in home, preparing meals, cleaning the home
        • Is not paid for by IHS, Tribal or Urban Indian programs
        • Is not paid for by Medicaid or Medical unless you have special circumstances
          • You are eligible for these services according to the Americans with Disabilities Act or similar federal Acts
      • Hospice care
        • Is provided by many different trained caregivers who are both medical (doctors, nurses, physical therapists, physical rehabilitation) and non-medical (like social workers, legal aid, spiritual healers) working for a hospice service
        • May or may not be paid for by your private health insurance
        • May or may not be paid for by Medicaid or Medical
        • Is rarely paid for by IHS, Tribal or Urban Indian programs
            You need to check with your local IHS, Tribal or Urban Indian program to find out what hospice services they are able or unable to afford.




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