Living with the End of Life 1/22/23 Forum with Mary Hampton

A link to the recording of this forum will be added here when it is processed.

AMBIS has changed its name to the Funeral Consumers Alliance of Central Texas  or FCACTX

Their website includes a biennial Funeral Home Price Survey and links to a variety of Advance Directives documents.  

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End of Life Planning Workshop 2/7/04

AMBIS (Austin Memorial and Burial Information Society) - Daesene Willmann

General Intro

AMBIS is a nonprofit consumer education organization run by volunteers, which is a Funeral Consumer Group (FCG). FCG's were started by US churches in response to Smith's book The American Way of Death. Membership in one FCG is usually transferable to another. Membership in Ambis is $25.00. Ambis' biggest referral sources are hospices and friends of Ambis members. The day you put your membership check in an envelope and mail it in, you become an Ambis member. This makes it possible for people to join just before death. Most people find the Ambis price survey very helpful.

Cremation and alternative burial arrangements

Crossings is a self-help group that helps families deal with the death and burial of someone themselves. (There is no need to be intimidated by dead people; they have a peaceful look and can be refrigerated). Green burial is possible now, because there is a green cemetery in Huntsville. What goes into ground must be completely biodegradable e.g. a cardboard or pine box with sleeping bag. You can buy cardboard burial containers over the Internet. You can usually bury people on your own property if it is outside the city. You need to notify authorities so that the plot is designated a cemetery. Sometimes you can leave someone in a hospital morgue for viewing pending burial arrangements and transfer the body yourselves to cemetery/crematorium (with a permit). Texas funeral law says you must have consent of next of kin to cremate someone.

Dealing with Funeral Homes

See purple FTC booklet entitled Funerals: A Consumer Guide for information on funeral law/Federal Trade Commission regulations. One can file complaints against funeral homes, but few people do because they are so traumatized by the death experience. Funeral contracts are helpful, because the funeral directors know better what the deceased person's wishes are. It also helps in dealing with funeral homes if you mention you are an Ambis member. Pre-plan but don't pre-pay a funeral home or cremation society. Put a sum of money to cover burial/cremation expenses in an account that earns interest and that has two signers: you and someone else. Austin-Peel & Son used to be Ambis' contracted funeral home, is locally owned and a good place to go. $790 is their price for cremation. $595 is the current Ambis contracted price at the no frills funeral home Forever All Faiths Funeral Services on 4360 S. Congress 326-8878. Only one crematorium in Austin deals directly with consumers: Onion Creek. The others deal with funeral home staff only. You can buy caskets directly from Bill Collier Affordable Caskets in Austin, TX., and save a lot of money. Otherwise, you have to buy the caskets from funeral directors. Green cemeteries do not require outer burial (cement) containers but all others do. Service Corporation International (SCI) has bought up thousands of funeral homes around the country, and usually charges high fees. Persons are very vulnerable at the time of loss of a loved one, and funeral directors sometimes take advantage of this in terms of pricing, etc. Funeral homes don't have a lot of business, so they try to extract as much money as possible from every death. The average cost of a funeral in the US is $6000-7000 and in Europe it is $2-3000.

Medical POA and Advanced Directives - Sherilynn Brandenstein and Daesene Willmann

Intro

Advanced Directives is an umbrella term for Directives to Physicians/Family, DNR orders, Medical POA etc. Having Advanced Directive documents greatly reduces the stress your loved ones face when dealing with your illness, funeral and burial. These documents should be completed while you are competent for use when you are not competent or not able to communicate your wishes. You can change POA and other Directives at any time if you are competent. Placing a plastic case with your Advanced Directives in the refrigerator is a good idea, because it protects the documents in case of fire or flood. Don't put Advanced Directive documents in a safety deposit box or other location that is hard to access. Daesene brings a copy of her Advanced Directive forms with her whenever she goes into to the hospital and makes sure her primary care physician has a copy. In the hospital, a social worker can best guide the patient in filling out Advanced Directive forms. Each state has Advanced Directive forms. Texas recognizes other states' Directives as long as they do not conflict with Texas law (e.g. Texas would not recognize Oregon's Aid to the Dying directive). SB strongly recommends a book by Hank Dunn entitled Hard Choices For Loving People.

Directive to Physician and Family or Surrogates or Advance Directive - formerly called Living Will

The Directive to Physicians and Family/Surrogates or Advance Directive (AD) is often used in non-emergent situations for persons with an irreversible medical condition or a terminal condition. Early in course of such a condition, you are competent and can care for yourself. But later on in the disease, you may no longer be able to care for yourself nor make decisions regarding your medical care. This is when the AD helps medical staff and family members make decisions about your care. It's a comfort to family to know they are following your wishes, and can ease the grieving process. The AD is a form any one of us could fill out now and it would kick in once we become incompetent. If you are competent, you can override the AD at any time. Decisions about the Directive should be made if at all possible when you are not in pain or under emotional duress. An "irreversible condition" is an illness or injury that may be treated but not cured, leaves a person unable to care for or make decisions about her/himself and, without life sustaining treatment, is fatal e.g. multiple sclerosis or Alzheimer's dementia. A "terminal condition" is an incurable condition that means that, even with life sustaining treatment, you have 6 months or less to live. "Life sustaining treatment" includes both life sustaining medications and artificial life support such as ventilators, cardiac defibrillators and dialysis machines. This Directive gives you the option of being kept alive in an irreversible or terminal condition using available life sustaining treatment or being allowed to die gently. It also allows you to request or refuse specific treatments (e.g. organ transplantation, mechanical ventilation, kidney dialysis, repeated blood transfusions, and certain antibiotics). You must always consider quality of life when making decisions about the above treatments/surgical procedures. An AD stating you want available life sustaining treatments (e.g. ventilators, defibrillators) will not be implemented if you are in hospice care. Hospice care is comfort care only: breathing treatments, fluids and medications. Inside a hospital, an AD form stating you want comfort measures only (e.g. fluids and pain medications rather than available life-sustaining treatment) will be ignored if you are pregnant. You will be kept alive until your fetus is viable.

DNR orders

DNR (Do Not Resuscitate) orders are used in an emergency situation. A "DNR" order is also called an "Allow Natural Death" order. This is a hospital DNR order that tells nursing and medical staff what to do in situations when your heart stops, your BP drops so low that death is imminent and/or you stop breathing. Without a written DNR order (or a verbal order from a guardian, a person with POA or the family of patient), cardiopulmonary resuscitation (CPR) will automatically be started and continued until medical personnel see a signed DNR document or bracelet. A DNR directive can be changed at any time by a patient if she/he is competent. You need a doctor's order for a bracelet stating "no DNR." Carry a signed out of hospital DNR document with you at all times, and put a copy on the outside of your refrigerator door or back of front door. You could add an AD or Directive to Physicians and Family/Surrogates to your DNR document. Give your family members a copy of these documents. The EMS (Emergency Medical Service) personnel must be able to see a DNR bracelet or written DNR (and verify that it applies to person who has collapsed) in order to withhold CPR. For healthy people, an Advanced Directive and Medical POA are reasonable, but not a DNR order. A DNR order is usually a decision made by persons with terminal illness: a heart condition, kidney failure, cancer, end stage AIDS. There are three categories of in-hospital DNR orders. Category I means the medical and nursing staff should do everything possible to resuscitate the patient: give cardiac medications, electric shock, perform manual chest compressions, intubation and ventilation. The 15 percent of people who survive a cardio-pulmonary resuscitation situation are younger persons without serious medical conditions. If they have complex medical problems and survive CPR, their quality of life is not likely to be very good. Category II means that aggressive medical management including IV antibiotics and cardiac medications, but not CPR, is indicated. Category III basically directs medical staff to "keep me comfortable, but allow me to die." It usually means fluids and pain medications. Medical personnel will not try to shock the heart, give rescue ventilations, or drugs to stimulate the heart nor raise the blood pressure. An out of hospital DNR form is used for anyone outside of hospital. It is used for example for persons in nursing homes, persons in hospice situations and by EMS staff who are transporting people. If the patient is incompetent and has no family, this form can be signed by two physicians. In contrast, an in-hospital DNR form must be signed by someone with POA. In the hospital, social workers try very hard to find a guardian or person with POA to take on the responsibility of signing this form (as opposed as two doctors).

Declaration of Life Directive

A "Declaration of Life" directive specifies that if I die in a violent crime, I do not want my killer to get the Death Penalty.

Medical Tissue and Whole Body Donation

Medical Tissue and Whole Body donation is a post-brain death or post-mortem directive. This subject is usually broached at the time of death. It is important to talk to your family about this in case people cannot find your organ donor card, etc. If a person is hospitalized at the time of death, the hospital must complete an assessment of whether the individual has illnesses or conditions that would preclude organ/whole body donation before making a call to a donor center. Skin and cornea can be taken from corpses, even those of elderly persons. A medical center may refuse a body for medical reasons or because it has enough bodies. There is a list of facilities in Texas that accept whole body donation. San Antonio is currently the most liberal about accepting whole body donation. There is a document you must sign for whole body donation, which means you must let the organ and tissue center decide how to use your body. You and those with POA for you do not have a lot of control over whether your body or body parts go to a profit or non-profit organization. Have a backup plan in case they cannot use your body or body parts.

Medical Power of Attorney and Body Disposition - Daesene and Sherilynn

In choosing someone to assume Medical Power of Attorney (POA) for you, consider the following questions….

• Who has the best understanding of my wishes?
• Who has best temperament to deal with my wishes?
• Who do I want to be my primary, secondary and tertiary decision-maker?
• Have I spoken with the persons I have chosen to be my agents and given them all copy of my POA document?

The Medical POA form must be witnessed not notarized. The first witness must not be the agent (person to whom you give POA), relative, any person with a claim to your estate, a doctor or his/her employee or a hospital worker providing care to you. It could be a housekeeper in the hospital. The Texas order of succession in terms of consent is: surviving spouse, adult children, surviving parents, surviving adult sibling followed by any adult related by blood who is named in will. In other words, these people (in the above order) will get Medical POA if not specified in your will or Advanced Directives. Legal order of kinship leaves out lesbian/gay partners unless specified in a Medical POA document. Under state law, if you are in a same sex relationship and don't name your partner as the person with Medical POA, your adult children will get POA. The Medical POA form makes it possible for a dying person to designate his/her partner or anyone else as agent, overriding the Texas order of succession. This form must be witnessed and notarized. You do not need the signatures of all your children, for example, if you have this form. Copies of this form are usually adequate in legal matters (as opposed to originals). Even with a Medical Power of Attorney, it is helpful for family members to be speaking to one another and cooperating rather than fighting the person who has POA. If you have unresolved family issues, they will surface during family medical decisions. It is helpful if the person with medical POA consults the entire family before making decisions on behalf of the ill or dying individual.

Statutory Durable POA for financial matters - Daesene

This must be notarized. It can be used even if you are not ill or incompetent. If you are competent and out of town, it clarifies who is responsible for your financial and legal matters. Some living trusts can include advanced directives.

Wills and Trusts - Jim Tourtelott

Wills

A will is a legal document that includes a description of where you want the things you own to go. The more specific you make it, the better. What is needed is your name, residence, a brief description of your assets (what you own), executor, guardian of minor children, beneficiaries, signature and witnesses to your signature (two required in Texas). Unspecified assets go into a residual clause, which says the rest of your estate goes to the principal beneficiary. You need the names of your beneficiaries. You need an executor who knows about the beneficiaries. People die, including people you want to give money/property to, so you need to specify alternate beneficiaries. You need a lawyer if you have anything more than a very simple will. Jim very strongly recommends an experienced will/trust lawyer. He cautions us not to do everything ourselves. One problem with "do it yourself" wills is that these forms are not tailored to meet each person's unique circumstances. For example, the stated duties of the executor, lawyer, guardian etc. may not be clearly demarcated in a way that meets your wishes. A will costs $500 and a trust $1000-2000.00. Place your will in a place that is safe but accessible. You only want one signed copy of your will to exist to prevent complications. Usually, your lawyer will keep an unexecuted (unsigned) copy and information on where the executed (signed) copy is kept. The lawyer or executor can keep the executed copy, if you wish. You can amend a will with a codicil; you can redraft a will or make a new will and destroy the old. You want to avoid any contesting of your will, because it takes time and money. Intestacy means dying without a will. If there is no will and there are no obvious beneficiaries, the state gets your estate. Texas is a community property state. Death dissolves the community. If you die intestate, 2/3rds of your estate goes to your children and 1/3 goes as a life estate to your spouse, unless you specify otherwise. Your estate is any property, money you had before you married. Real property is real estate: houses and land. Personal property includes clothing, BMW's, diamonds. Gay and lesbian couples should have wills, because as far as Texas is concerned, you and your partner are roommates. Without a will, a distant relation, rather than your partner of 30 years, will end up with your property. Your estate may be worth more with time, even after death. Hence, a will is always a good idea. Never make your executor a beneficiary in the will or the will may be contested; there is the issue of undue influence. It helps if family survivors all agree on executor. No beneficiary of the will should be a witness. Ideally, you should meet with your chosen executor, guardian and lawyer to work out (and put into writing) the duties of each. It is important to clearly demarcate who makes which decisions after you are gone. Nobody likes doing this because one has to envision one's death or the death of others. But the more clarity of direction in the will, the better. You can specify in a letter of instruction that you specifically do not want someone as a guardian, that you will or will not pay the executor, how you value property, etc.

Trusts

A trust is the creation of a legal relationship in which one person (trustee) holds or is responsible for property for another (beneficiary). The trustee holds the property for the beneficiary. You can name yourself and someone else as trustees. The other person can take over in case of your death as trustee of the trust. Trusts sometimes help reduce income taxes. If you have minor children, a trust would permit your children to use and benefit from the money you are going to give them without the responsibility for the money. If you wish to create a trust, you must find an executor - a person charged with the administration of the estate. He or she will pay taxes, make distributions, make legal announcements to Social Security and pay off debts. Everyone needs to name an executor and an alternative executor. The executor must consent to execute estate. If you can't find someone, you will be given a court ordered executor who will charge a fee.

Guardians

If you have minor children, you must name a guardian. He/she need not be bonded. If the person you have listed as guardian refuses to be a guardian, or if no guardians are specified, you will get a court ordered guardian, and this will cost money. The court ordered guardian must be bonded. You should sit down and talk with potential guardians to explain the responsibilities involved. As guardians, they will have responsibility for your children until the children reach 18 years of age. You should also name an alternative guardian.

Grief and Loss - Sherilynn Brandenstein

General

The word grief means robbed. We all grieve in different ways. Some cry, some search for the gravestone day after day and some avoid the whole issue. The grieving process is affected by how suddenly the death occurs and whether we think the death was preventable; these two things can complicate the grieving process. Grief is an emotional, cognitive and behavioral period surrounding significant loss. One who is grieving will not only be emotionally labile but will demonstrate behavioral changes (e.g. over or under eating) and find she/he is not as sharp intellectually as usual. We can experience grief at loss of a home, a job, loss of health or limb, divorce, as well as loss of a loved one. Grief is homage to what mattered to you. Anticipatory grieving means we anticipate losing someone close to us. We realize a person is no longer able to do what they used to do, are losing their memory, etc. We realize they won't be around for certain things, etc. Grieving can unfold before actual physical loss occurs. Shadow grief is closely tied to sensory part of our brain and can be very visceral. Smells and sounds and places can take us back to a memory of a person we have lost.

Cycle of Grieving

Kubler-Ross talks about a cycle of grief starting with loss/crisis progressing to shock/retreat or denial ("no, no!"), anger (family and patient may take it out on doctors, hospital staff), bargaining ("if I just do this or that"), depression/sadness leading eventually to acceptance and healing. If depression/sadness goes on a long time and begins to affect the health of those affected, one must address it. People can move through grief more steadily if they can see a person has died. Grief is complicated when we have no evidence of death, cannot see a dead body or body part.

How to help

To help someone who is grieving, you can be present (if that is what he or she want). You can take the initiative to check in with them; they may not have energy to call and ask for a visit, etc. You can listen. Letting a grieving person tell and retell her/his story helps that person deal with her/his loss. Denying (or resisting) can be a good way for persons to cope with illness/death. Respect denial, don't challenge it. Offering tangible help e.g. cooking a casserole or babysitting can also help. Offering to read to someone or to pray for him or her can also be comforting. Sending cards can be very meaningful to family members of the deceased. (Joanna commented that she had to send announcements of her mother's death to everyone in her mom's address book in order to get cards.)

Children

Children who are left behind cope in different ways, based on their age. Children under 5 years of age can accept small pieces of truth at a time. Sherilynn saw one 3 year old look at her sister's casket for several minutes, then go out and play with abandon, then come back in and look at casket again. Children in elementary school will want to know a lot about the mechanics of funerals and burials. They are curious and will ask a lot of questions. Teens may not talk to the adults in a family, but will talk with their friends. In this way, they feel they are not burdening the adults. It is wise to allow children of all ages to view the deceased body even for five seconds; it helps them accept what has happened. If a child says they do not want to see the deceased person's body, respect her/his wishes. A photo of the deceased person can help with acceptance. (Margaret Hofmann suggested that if we feel unsure about some aspect of death, we can admit that to children. Martha Stockton mentioned that we shouldn't tell children that a deceased person is sleeping, because then children may fear sleep.) There is a fifty- percent divorce rate among couples who lose a child, because both parents are grieving and are unable to support one another. It is hard to lose a spouse, cope with your own grief and respond to the questions of your child at the same time. (ed 4/6/04 pr)