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Hospice and End-of-Life

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Hospice and End-of-Life

  • Which phrases describing death are you most comfortable with or as used by elders of your tribe?
    • Death and dying (same as white culture)
    • Cross the river
    • Walk on
    • Move on
    • Passing on to the other side
    • Gone to the spirit world
    • And of course the one popularized by Hollywood, Gone to the happy hunting grounds
  • Dying and Death
  • Everyone dies

Add Bonnie Craig photo here; Jared, hold on this;  you and I were deciding how to include all of these video vignettes

When something like cancer occurs in an Indian family, you deal with the extended family.
You also deal with your core family. The core family, I think, is surrounded and protected by this larger extended family. My news of being diagnosed with cancer was the same as death occurring in our family system.
My husband's younger than me. We're very close, and the day that I had to go home and walk in the door and tell him what the doctor said, you know, I wish that I didn't have to see that look on his face because it was absolute fear. Because he asked me, "You're going to live, aren't you." And nobody knows that."

  • Death is most upsetting when our children die before us
    • We feel they have been robbed of their youth and lives
  • Teaches us that life is precious and need to focus on what is good in life rather than minor annoyances
  • Death may be sudden such as from an accident or heart attack
  • Death may be slow such as from a chronic disease, like cancer
  • Death may be painful or with little discomfort
  • "Death is not a failure, but a transition" (Megory Anderson, Founder, Sacred Dying Foundation. Cure: Spring 2003. p. 55)
  • "Victory is in the struggle, going on when you think you can't" (Lege, Cara Lyons, Life lessons. Cure: Spring 2003, p. 67)
The goals for cancer researchers is for cancer patients to:
  • Have a higher quality of life than patients have experienced in the past
  • Stay as healthy as they can to that they can benefit from new, effective cancer treatments
  • Have the opportunity to eventually die from something other than cancer
  • This is because many people who have had cancer in the past do not necessarily die from cancer; their eventual death is from something other than cancer
  • You may wonder why people who have had cancer are now doing better than they used to​​​
    • In 1971 President Nixon formally announced a "War on Cancer"
      • Until that time, research and knowledge about the many diseases called cancer was very limited
    • Because of research done since 1971, more and more people are living after going through a cancer experience
    • They learned that there are more than 100 different types of cancer
      • Many of these types are becoming chronic diseases rather than a cause of death

Hospice

  • What it is and is not
    • It focuses on comfort and lessening of symptoms rather than cure
    • It includes integrating psychological and spiritual aspects of care
    • 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
        • The chemo or radiation is likely to improve your quality of life but is not being done to "cure" the cancer
  • 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
  • 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 Facts and Myths about Hospice Care

Click on the MYTH to see the FACT

Most patients enter hospice care when they are within a few days of dying ... final days ...

FACT: The doctor has to determine that the patient, is probably going to die within the next six months. For the patients who do better than how the doctor predicted, the hospice services are still eligible for pay by medicare.

(Boughton Barbara. Facing the Future: Planning for a Good Death. Cure: spring 2003; pp. 52)

One of the Native men in the NACR Survivors' Support Network was having many problems. The Western medical doctors talked with the man and his family and told him he was not likely to live more than 6 months. The patient wanted to remain at home. With the help of the doctor and the family, hospice services were started and provided in the home. The Native man and his family had the Traditional Indian Healer come several times each week and pray and do some ceremonies to prepare for passing and to relieve some discomfort. The patient started to feel better and wanted to work on some of his leather crafts. Then he wanted to get up and walk around the village. Gradually, he returned to his normal way of living. The hospice nurse reduced her visits to once or twice a month to check that he has his medications and to see how he is doing. It has been more than 5 years now (2007) and he is still doing well. Because he was eligible for and started hospice, Medicare continues to pay for his nursing visits and his medication. They also still pay for his special bed that helps him get in and out of bed. The Western doctor visits with the patient and has also met and visited with the Traditional Indian Healers. The doctor says these visits always make him (1) feel happy for the patient and family, (2) feel humble and thankful, and (3) more open to other forms of healing. He has great respect for combining Western medicine with Traditional healing.

Story told by Linda B, 2007 with permission and based on long-term relationship with the patient and family

Hospice care is more expensive than is hospital care.

FACT: Hospice care costs hundreds of dollars a day less than either hospitalization or nursing home care for the dying.

(Boughton Barbara. Facing the Future: Planning for a Good Death. Cure: Spring 2003; pp. 52)

Hospice care is only available from hospitals in the city.

FACT: Hospice care is more common as home-based care than in the hospital. Members of the medical care team visit regularly. However, because many Natives live in rural areas or on Reservations, it may take several months to set up the in-home care. Even in many cities and towns, it can take a few months to get in home care set up.

(Boughton Barbara. Facing the Future: Planning for a Good Death. Cure: Spring 2003; pp. 53)

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

FACT: end-of-life care information is included in less than half of the top medical school textbooks

(Boughton Barbara. Facing the Future: Planning for a Good Death. Cure: Spring 2003; pp. 53)

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

FACT: Hospice provides appropriate pain relief medication and can teach family members how to administer it. Some patients are able to control the amount of pain relieving medication they receive themselves. Other times a family member has this responsibility.

For most people the physical process of dying is painful.

FACT: "...for most people, dying is a very gentle process"

(Ira Byock, MD. as quoted in Jo Cavallo, Confronting Death Cure: Summer 2006. p 22)

 

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
  • 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
Hospice is when it is anticipated that you will die soon (e.g., within the next six months) and it too may be in the home or in a facility
  • You may be eligible for hospice (end-of-life) care 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.