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The Will and Advanced Directives

  • Coping with our dying
    • We all know we are going to die someday

      Scott Walz
      Dx 1995 Rectal Cancer

      "When you decide I'm living with this disease, whatever it is. You change, and you start living. I mean we're all going to die from something anyway."

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      George Hogan III
      Crow Tribe
      Dx 1992 Lung Cancer

      "Don't worry about it, it will go away attitude. That's what killed a lot of us. They let it go, and once they are told they are dying of cancer, they even quit going to the doctor, they don't want to hear it. They just live that way until they die."

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    • Realizing that death is real may help you look at your life differently
      • What are the meaningful times of your life?

        Thunderhand Joe
        Dx 1990 Pancreatic Cancer

        "Death is a wonderful advice. The fact that you know that you are going to die tomorrow .... what are you going to do today. Shit! I am going to live. You know. I want to do everything! And that was my attitude. So they weren't going to stop me from going to play."

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      • This is not to focus on guilt for bad choices or events, but to put them into a balanced perspective. All of us experience hard times and good times. Some are public or private events
      • Taking part in a traditional ceremony
      • Training others on how to do a traditional or modern craft or skill
      • Getting your first home or job
      • Falling in or out of love
      • Winning or losing a fight of some type (with tribal council, at work, over a historical cultural issue)
      • Starting or ending a program
      • Being in the tribal newspaper for something you or a family member did
    • What are some things you wanted to do, but didn't? Are there ways you can do any of them now?
  • What did you learn during your life?
  • Which of these lessons do you want your family or friends to know? How do you want them to know about these lessons?

    Scott Walz
    Dx 1995 Rectal Cancer

    "I finally decided that instead of dying from cancer or AIDS I am living with the situation, instead of dying from the situation. Is a pivotal point to one's life that you can change. And that's what made a big difference for me is I decided I was living with AIDS, and I really began living. I started doing what my doctor ordered followed through on all my medications start doing, being more active as much as I physically could, as far as some exercise, I did join a gym then and did my physical exercise in as much as possible. Just slowly but surely, over time started getting better."

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  • How can you help your family create a family history?
    • You may want to write down (or dictate) stories you remember from your childhood and relatives who were alive
    • Your family may be able to record or film you telling the stories from your life and upbringing
    • You may go through family photos with the family and help them label who is in each photo

    Mary Namce
    Kickapoo and Hispanic
    Dx 2000 Ovarian Cancer

    "I didn't go through denial or the stages of dying."

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  • Wisdom from Others while they were nearing death from chronic diseases NOTE: several of the quotes are from Anonymous Native cancer patients who do not want to be identified, but want their message shared with others. Linda B.
    • It's important to talk with your family about things. You don't want to get stuck in your own mind and not share what you're thinking. It helps you and it helps them. Anonymous Native cancer patient, 1993.
    • Make your own rules about how you want to live out your days; don't let the doctors or others make the rules for you. Anonymous Native cancer patient, 2006.
    • Every day is a blessing. Enjoy each day as much as you can! Anonymous Native cancer patient, 1998.
    • Once I knew my family was going to be okay, I was able to relax. I am ready. I've done what I needed to do with my life. Anonymous Native cancer patient, 2001.
    • I fought as long as I could. Now I'm just tired of fighting. I find I enjoy each day that I wake up and thank the Creator for another day, but anytime He decides I should go, I'm okay with it. Anonymous Native cancer patient, 1999.
    • I'm not going to die everyday until I die (Lege, Cara Lyons, Life lessons. Cure: Spring 2003, p. 69)
  • Preparing for death

    CeCe Whitewolf, JD
    Confederated Tribes of Umatilla and Nez Perce
    Dx 1998 Breast Cancer

    "I first got involved with cancer when my mother was diagnosed with lung cancer. By the time she was diagnosed as she was told she has two years to live and I'm the eldest of nine."

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    • You may prepare for death in both traditional and non-traditional ways
    • Traditional Native ways include ceremonies to bring balance and peace both to you and to your family
      • These differ among each of our tribal Nations. But, most include working with traditional healers about how the ceremonies require:
        • Preparation of the body Note: several tribal Nations do not allow bodies of tribal members to have autopsies, even if the death is sudden.
        • How the body is cleaned
        • Who prepares the body for burial or burning (e.g., elder woman of the family)
        • How soon after death the body is buried (e.g., within 24 hours of death; within 3 days of death)
        • What time of day the burial or burning occurs (e.g., sunset)
        • Who carries the body to the ceremony
        • Where the body is to be buried (secret, private location on the reservation; cemetery)
        • What position the body is placed for burial or burning
        • What is included with the body for burial or burning
      • What prayers are said during the ceremony? By whom? When? How?
        • How each person at the ceremony is allowed to "say goodbye"
        • What words or names are not allowed before, during and following the ceremony
        • Clothing worn by the
      • How the grieving family is supposed to behave
        • Before the death
        • During the ceremony
        • For the 12 months after the death (e.g., not allowed to dance at PowWows or Community events)
          • What type of ceremony occurs one year following the death
          • What the family and close friends are expected to do during the burial ceremony
          • What types of herbs or plants are burned or offered
          • Sage
          • Cedar
          • Sweet grass
      • Most include private practices that cannot be shared outside of the family members and healer taking part in the ceremony. This is to:
        • Avoid others from disrespecting customs (like people who take parts of ceremonies that are easy and seem magical to them. But they do not do the harder parts of the ceremony that take more preparation and are essential in making the ceremony work as they are supposed to)
        • Make it more likely that the dying person and their families get the guidance they need from a respected traditional healer from their own tribal Nation
        • Make it more likely that if a ceremony needs to be modified for someone who is dying sooner than was expected, only the traditional healer decides which ceremonies are appropriate and which will need to be done by the grieving family members after the death.
      • Non-traditional ways include making out a Will and Advanced Directives (see the information on making out your Will and Advanced Directives later in this section)
        • You do not have to wait until you are close to death to make out a Will or decide on your Advanced Directives
        • You can make out your Will and Advanced Directives as a young adult or middle age or as an elder
        • Even a young child can make out a Will and Advanced Directives, but these have to include the parent's involvement
      • Talking about and preparing for death is not giving up hope. It gives you a chance to make choices about:
        • How you want to be treated while you are still alive
        • How you want your belongings to be given away to those who love you

  • Information about a study with dying patients and what was helpful to them and their families (Ira Byock, MD as quoted in Cavallo Jo, Confronting Death. Cure: Summer 2006, p. 24)
    • The study found that there are important things to say to your family before you die:
      • Please forgive me
      • I forgive you
      • Thank you
      • I love you
    • Most of dying patients who were able to do these four things said that it :
      • Increased their feelings of dignity (76%)
      • Increased their many others said it increased their sense of purpose (68%)
      • Helped their families (81%)
      • Helped the patients who were dying because the patients felt the family members were more likely to:
        • Think of the dying patient with respect and having dignity
        • Have good memories of the patient (Cavallo Jo. Confronting Death. Cure: Summer 2006; p. 24)
  • What is a final Will? A will is a document you can use to control:
    • Who gets your property,
    • Who will be guardian of your children and their property, and
    • Who will manage your estate upon your death?

      Mary P. Lovato
      Santo Domingo Pueblo
      Dx 1987 Bone Cancer
      Dx 2006 Leukekia /
      Kidney Cancer

      "I started getting ready on everybody telling them what goes to who and who gets this. So I told my sister I said Val's gonna keep the house if I go because him and I are the only ones living there. And I told them that Val is going to stay there and keep the house and if the sister and her husband ever separates she comes back to the village she has a home. And then I told my other son, that lives with my sister. So I prepared everything because I thought I was ready to go. I thought this second round with my cancer that was my sign for me to go. Because the first time I had cancer and I went into a coma, I saw my mom, I saw my dad."

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      CeCe Whitewolf, JD
      Confederated Tribes of Umatilla and Nez Perce
      Dx 1998 Breast Cancer

      "My stepfather was diagnosed with bladder cancer ... bladder cancer. Told he had about six months to live. I was able to help my stepfather do his Will, and to finish lot of his financial things that he had to do before he died and so we did that and so at the time of his death then all of that was already taken care of."

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      What does "estate" mean?

      1. A large tract of land with a house and horse stable
      2. A word to describe the time between death and burial
      3. Somewhere that a rich person lives
      4. All of a person's material possessions
      5. A mansion
      6. Don't know / Not sure
      7. Don't want to answer

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    What types of things are included in an "estate"?
    • Property
      • Land, Stock, Bonds, Bank Accounts (checking and savings), Life Insurance, Trust Fund, Home, Retirement Plan, IRA, Pension Plans, Investments
    • Money (cash)
    • Personal Belongings
      • Jewelry
      • Pets
      • Clothes
      • Ceremonial Articles (pipes, shells, eagle feather fans)
      • Arts and Crafts
      • Paintings
      • Photos
      • Pottery
      • Dance regalia
      • Knick Knacks

    • Everything you own
      • Anything that is yours and you value
      • Does not include anything that is "joint ownership", like your home or your land may be owned by both you and your spouse as "joint ownership". This property goes to your spouse. "Joint ownership" may also be with your best friend or partner. Again, the property would then go to your best friend or partner.

    • Some bills may be included
      • Some bills are paid out of the estate, and some are not.
      • This depends on whether or not your estate can afford to pay the bills. If not, someone from your family usually pays them.
      • Sometimes wills are organized to say which bills are paid from the estate and which should not be paid by the estate.
  • Why does it need to be in writing?
    • Oral directions are not accepted as legal or binding by states or most tribal nations.
    • It also needs to be signed by a witness (anyone you trust).
    • Some statements in wills are not as clear or binding as we may think they are. This is why it is important to have a lawyer review and legally file your will for you.
    • Some Natives share stories about wills from family or friends whose will was lost after the individual died. To avoid any risk of this, have a lawyer file and store your will.
  • Who makes the decisions for your will?
    • You decide who will get your property, who will be responsible for your children, if any, and who will make certain your wishes are followed. This includes that your will is carried out the way you want it to be. It also means they make certain your wishes about your burial are done the way you want.
  • What is a "Beneficiary"?
    • These are the people (relatives and/or friends) or organizations who receive specific personal items, property, and/or money according to your will.
    • You can specify who gets what in your will.
      • Does this have to be the same person?
      • 1. Yes
        2. No
        3. Don't know / not sure

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  • What is a guardian?
    • A Guardian is a person who will care for your minor children or disabled, dependent family members when you are gone.
      • Don't my children automatically go to my parents?
      • 1. Yes
        2. No
        3. Depends on state law if you live off the reservation
        4. Depends on tribal law if you live on the reservation
        5. Don't know / not sure

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  • Who makes sure my wishes are followed?
    • The executor is the person who will is charge of handling your estate.
    • An executor can be a sister or brother, other family member, friend, or even a bank or attorney.
    • The executor's duties may include:
      • Filing taxes and other forms
      • Gathering your assets (estate)
      • Giving your estate to your beneficiaries as your will states
      • Hiring attorneys or accountants to assist carrying out challenging parts with the implementation of your will (e.g., something may not have been as clear and understandable as you thought it was - which turquoise necklace goes to your sister and which one goes to your daughter?)

  • What do you think happens if you don't have a will?
    • The laws of the state you live and die in will determine who receives the property that you own and your children. Some tribal Nations have clear rules about the belongings, property, or estate of a tribal member who dies on the reservation, but others accept the state rules and processes. A tribal member who dies away from the reservation is usually under the rules of the state.
    • In most states, if money (bank accounts) and or real estate are jointly held, it will pass to the joint owner with or without a will.
    • Any property in your name alone will go to the persons named by the state law.
    • Every state has different laws but they typically provide for the following:
      • If you have a spouse and children, the state divides the property among them.
      • If you have a spouse and parents or siblings but no children, some states give it all to your spouse while others also give a share to your parents and siblings.
      • If you have children and no spouse, everything is divided among the children.
      • If you have no children or spouse, your parents would get your property, unless a share was given to your siblings.
      • If you have no spouse, children, or parents, your brothers and sisters would share your property.
      • If you have no spouse, children, parents, brothers, or sisters, your property would go to your grandparents, aunts and uncles, or nieces or nephews in that order.

    • What about my children?
      • You can appoint a guardian for your minor children in your will.
      • You can also appoint someone to take care of the property or money that you leave to your children.
      • Typical Sequence
        1. Spouse if legally married.
        2. Children
        3. Parents
        4. Brothers and sisters
        5. Grandparents
        6. Aunts and Uncles
        7. Nieces and Nephews

    • What about my dependents(like a disabled adult child or relative; or a dependent elder)?
      • You can appoint a guardian for them in your will, similar to the process as if they are your children who are under 18 (above).
      • If you have no will, the state may place them in some type of state-operated home or facility. You need to have a lawyer help you with your will to make certain your wishes for the people who are dependent on you are safe. The legal language that a lawyer can help you with can avoid legal battles over who has custody over them after you pass.

    • How do I make a Will?
      • Anyone over the age of 18 years of age and who is of sound mind may make a will.
      • What do I do first?
      • Make a list of your real personal property, real estate, and bank accounts etc. Be very specific in your descriptions.
      • Decide who you want to receive each item, or how you want the item divided among your beneficiaries.
      • Identify the people you need to help you as Executor and Guardians and witnesses.
        • Can I leave someone out of my will?
          1. No, if they are your spouse or child, you cannot leave them out of your will.
          2. No, if they say that you verbally gave them something while you were alive.
          3. Yes, you can leave them out, but if they can prove a blood relationship with you after you die they can get back in.
          4. Yes, you can name them specifically, and their family members if you desire.
          5. Don't know / not sure

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      • When making your will you can include a section where you name a person(s) and leave them completely and forever from receiving anything from your estate.
      • What if someone contests my will?
        • When making your will you can complete a "Self-Proved Will Affidavit" which is notarized by someone who is a recognized "Notary Public" and two witnesses. You may have to go to a bank to find a "Notary Public" to sign and seal your document. Some large tribes have lawyers who work for the Nation and they can tell you where to find a "Notary Public".
        • This document is attached to the will and helps to prove that you stated your wishes in your will and that witnesses can attest to its validity.
        • What are characteristics of the witnesses?
        • Witnesses may or may not be relatives. It is your choice.
        • But, witnesses should be adults who are not mentioned in the will as executor, trustees, guardians, or beneficiaries.

    • Here is an example of the types of decisions you need to think about.
      • Please indicate, by checking the appropriate option, how you want your assets to pass when you die
          _____ Option A. I want my assets to pass to my spouse and children as follows:
        • To spouse, if surviving.
        • If my spouse predeceases me, my assets will be divided in equal shares among my children.
        • If any of my children predecease me, that child's share shall be distributed to his or her children in equal shares.
        • In the event that my spouse and all of my children and descendents fail to survive me, I want my assets to be distributed as follows:

          ____ Option B. I am unmarried with children and want my assets to pass as follows:

          ____ Option C. I am unmarried and have no children. I want my assets to pass in equal shares as follows: [List full names here]

    • Advanced Directives
      • Explanations
        • Advance Directives are legal papers. They summarize the kind of care you want when you are sick and dying. You make these decisions ahead of time. These Directives provide a way for you to let your family, friends, and providers know your wishes. These Directives help avoid confusion when you may be in a life or death situation at the hospice, clinic or hospital.
        • These "Directives" include medical, legal, and personal choices you may face in the future.
        • Advance Directives include (1) Living Wills; (2) Medical Durable Power of Attorney (for health care); and (3) Cardiopulmonary Resuscitation (CPR) Directives.
        • You can change your Advanced Directives when your health situation changes. Even after you sign advance directives, you can change their mind at any time (unless you are severely ill or under heavy medication).
        • You, the patient, have the right to make decisions about your own treatment. These decisions may change over time. In the face of worsening disease, you may want to try every available drug or treatment in the hope that something will be effective. Other times, you may choose to not take aggressive medical treatment. You may or may not want the advice of your family members, friends, or caregivers. But it is your decision how much or how little treatment to have.
        • Sometimes a patient is unable to make these decisions because of severe illness or a change in mental condition. That is why it is important for people with cancer to make their wishes known in advance.
        • Making your Advance Directives allows you to face the end of your life with dignity and with the same values by which you have lived.

      • Living Will
        • A living will is a set of instructions you make about what you want or do not want for medical care intended to sustain your life. You have the right to accept or refuse medical care. A living will protects your rights and wishes. It also removes the burden for making decisions from family, friends, and physicians.

        • A Living Will states what type, if any, of artificial life support you want used to sustain your life.

        • Artificial life support can include:
          • Life sustaining procedures including food
          • Kidney dialysis
          • Surgery
          • Transfusions of blood and blood products
          • Drugs and antibiotics
          • Artificial feeding and hydration (tube feeding)
          • Electric Shock and heart stimulation (drugs)
          • Breathing tubes
          • Withholding of food and fluids
          • Palliative comfort care
          • "Aggressive medical treatment" may include any of the life sustaining efforts. If you decide you do not want to receive "aggressive medical treatment", you will still receive medical care. For example, you may still receive antibiotics, food, pain medication, radiation therapy, and other care that is to improve your comfort.
          • If you do want "aggressive medical treatment", this means that you want them to sustain your life.
          • Patients can change their minds and ask to resume treatment that is more aggressive.
          • Any changes in the type of treatment you want to receive need to be stated in your living will.

      • Medical Durable Power of Attorney
        • Medical durable power of attorney is a document you sign naming someone to make your health care decisions when you are unable to make them yourself.
        • It is a signed paper that gives the responsibility to a designated person called the "agent" to make decisions on your behalf if you are determined to be mentally incompetent or incapacitated.

      • Who can be an "agent"?
        • Must be at least 18 years or older (in some states the agent must be 21 years or older)
        • Someone you trust
        • Someone who knows you very well
        • Someone who can make difficult decisions
        • Someone who is trusted by the survivor's family and loved ones

      • Who shouldn't be an agent?
        • Often a spouse or family member is too emotional to make hard decisions in respecting your wishes. Each person knows best for themselves.

    • Cardiopulmonary Resuscitation (CPR) Directive
      • A Cardiopulmonary Resuscitation (CPR) Directive means that if your heart stops beating you want to be left alone with no medical intervention taking place.
      • This is also known as a Do Not Resuscitate or DNR.
      • Check your local state requirements about whwere the DNR should be stored, if copies are allowed and how to modify.

    • How do I make Advance Directives?
      • To make an Advance Directive a person needs to ask themselves some very hard to answer questions.
      • Some people talk to loved ones when making these decisions. Others talk to professionals in the health care system.
      • Once you have made your decisions, write them down.
      • Document the directions with the signatures of two (2) witnesses.
      • Keep your Advance Directive handy so your loved ones and care givers will know your wishes.
      • Although a lawyer is not needed to complete advance directives, each state has its own laws for creating Advance Directives. A few tribal nations also have guidelines for Advance Directives. Because these state or tribal laws differ on some very important details, you may want to have a lawyer from your tribe or state review the Directives. This is to make certain that your wishes will be followed in case you make a mistake while you were writing them.
      • A Living Will or Durable Power Of Attorney signed in one state or on your home reservation may not be recognized in another.
      • You can get the forms specific to your tribe (if any exist) or state online, from the hospice, hospitals, providers, legal offices, Offices on Aging, and state health departments.

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