Palliative Care - Introduction

Which of the following phrases describing death are you most comfortable with or as used by elders of your tribe?

  1. Death and dying (same as white culture)
  2. Cross the river
  3. Walk on
  4. Move on
  5. Passing on to the other side
  6. Gone to the spirit world
  7. And of course the one popularized by Hollywood, Gone to the happy hunting grounds

Dying and Death
  • Everyone dies

    Bonnie Craig
    Black Feet
    Dx 1991 Ovarian Cancer

    "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."

    to play Video Vignette - click audio only

  • 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.
    • 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
    • There are more than 100 different types of cancer
    • Many of these types are becoming chronic diseases rather than a cause of death
    • Palliative care includes caring for patients who have a type of cancers that are:
      • Chronic diseases
      • Causing the patient to die

  • What is palliative care? Palliative care:
    • Is often called comfort care in our communities
    • Usually includes any care that helps manage or control the cancer symptoms, but the care is designed to cure the cancer.
    • Is becoming more common for all chronic diseases than it was before the 1990s.
    • Is important for cancer patients because more and more cancer is becoming a chronic disease that may or may not be a cause of death.
    • Is not the same as end-of-life care
    • But, it also includes end-of-life care (about the last six months of when death is expected).
    • It also includes support for
      • pain control
      • symptom management
      • spiritual needs and desires
      • personal needs and wants (unique to you and your life)
    • The support comes from an entire team of medical professionals: a physician, a nurse, a certified nursing assistant, a chaplain, and a social worker. (Boughton Barbara. Facing the Future: Planning for a Good Death. Cure: spring 2003; pp. 51)

  • The continuum of palliative care
    • The bottom portion shows that palliative care begins with the diagnosis of cancer
    • The time may be months to many years before someone dies.
    • The death may or may not be caused by the cancer (end-of-life on right-hand side of lower portion of the diagram)
    • The purple portion on the upper left-hand side indicates that efforts are to cure the cancer.
    • As you move from the left to the right portion of the experience, the efforts are to control or manage the cancer rather than to cure it.
      • A few types of cancer have no known effective cures. Or the cancer may be too advanced to try to cure the disease. There may be no attempts at curing the disease in these cases.
      • However, palliative care is designed to provide comfort and to control or manage the symptoms as much as possible.
      • With some types of cancer, like multiple myeloma, symptom management is more effective than for other types of cancer.
      • Drugs, like Thalidomide, control the myeloma. The patient may live for years without the cancer ever getting worse.
      • But Thalidomide has side effects and the patient may need help dealing with the side effects.

    • Throughout the palliative care continuum, the focus is to improve the patient's quality of life (QOL).
    • Rehabilitation takes place throughout most of the palliative care process.
      • When first diagnosed with cancer, this may include learning how to use part of the body that has been affected by the cancer or the treatment. For example, if you had lymph nodes removed, you may develop lymphedema. Rehabilitation helps teach you how to reduce the fluid that collects in the arms or legs. It includes exercises designed to review or manage the disease without causing further harm or injury.
        For example, a southwestern tribal elder was a sheep herder. When he knew he had to travel far to find and herd the sheep to another section of land he used to go all day long without eating. But after his cancer diagnosis, the therapist helped him find ways to pack and bring food and water with him to have throughout the day. Likewise, he needed to carry a light blanket to sit on because he had lost a lot of weight and his bones hurt him when he sat on the rocks when taking rests.
      • Rehabilitation may also include helping you develop a physical skill to increase your likelihood of getting and keeping a job. This is important if your cancer has resulted in you being unable to do the work you have done in the past.
      • It may also teach you different ways to do your work so that you do not injure yourself.
      • It may also include helping you learn how to prepare and eat foods that helps you feel better
      • Sometimes the medicines that you have to take do not taste good and the dietician or rehab staff can help you find foods or drinks so that you do not miss taking your medicines.

    • Symptom management is along the entire bottom of the diagram. This is because many of the symptoms from the cancer or the cancer treatment are uncomfortable. But with help from healthcare providers and traditional healers, you can find relief from this discomfort. This may be by changing the types of drugs you are taking or from traditional teas prepared specifically for you and your symptoms by the traditional Indian healer. It is important for you to tell the western provider when you are taking traditional Indian medicine. Many types of western and traditional medicines can work well together, but others do not and can create problems with either treatment being very effective.
    • End-of-life from cancer involves many choices. Some of these are about making out your will. Your will does not have to be done when you are close to the end of your life. It is best if this and Advanced Directives (see "the Mind" leaf) are done long before you are dying.
    • Natives also have many different ways that we prepare for death (see "the Mind" leaf)
    • Hospice care is part of palliative care, but it begins about six months before you are likely to die.
    • It is not only provided in hospitals away from the home.
    • Hospice care may be provided to you in your home (see "the Body" leaf).

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