About AHCA | Contact Us | Email a Friend About AHCA | Contact Us
Graphical top of the content well

End-of-Life Issues

A Practical Planning Guide

The Florida Agency for Health Care Administration is the chief health policy and planning group for the state and licenses and regulates health care facilities and health maintenance organizations (HMOs) in Florida.  The Agency also manages the Medicaid program that provides health care to Florida’s low-income and disabled citizens.  The mission of the Agency is to champion accessible, affordable, quality health care for all Floridians.  As part of this mission, we publish the Consumer Awareness Series, a variety of brochures to help the public make informed health care decisions.

This brochure provides an overview of end-of-life issues and practical planning. Other resources to help you prepare for or deal with death and dying can include your health care provider, religious or spiritual advisor, attorney, family and friends, hospice, as well as the contacts listed in the Resource Directory at the back of this brochure.

Note: This brochure is not designed to offer medical or legal advice. Please talk with your doctor for medical advice and an attorney for legal advice.

Information in this brochure is current as of March 2007.

Introduction

Many people are uncomfortable thinking about or talking with others about the end of their lives.  However, learning about end-of-life arrangements and talking in advance with your loved ones and your health care provider can help lessen fears.  Such preparation can also let those close to you know how you would like matters to be handled, making it more likely that your wishes will be carried out.    

This brochure looks at various choices available to you, whether you are preparing in advance or if you are a patient, family member, or friend already dealing with a terminal illness or with a sudden death.

You have the right to decide what kind of care you want or do not want, to choose where you want to spend the last days of your life, and to make clear what you would like from people close to you.  You have the right to choose how you want matters to be handled after your death.  We plan for other life events, like birth, graduations, weddings, and birthdays, but often we leave preparation for the end of our lives until the very end. 

At some point each of us will come to the end of our life.  Thinking and talking about it can make the experience less difficult for ourselves and for those we leave behind.  Being open can help us break through isolation, give us comfort and a chance to live our lives fully even as we face our mortality.

Topics covered in this brochure include:

Facing Death

When we face the end of our own life, or that of a loved one, we bring to the experience all of our values, traditions, emotions, and knowledge, all of the parts that make up who we are.  In some cultures death is accepted as a part of life, while in others there is a fear to talk openly about it. 

In facing your own terminal illness, or the death of a loved one, you may want to seek the advice and support of family members, friends, religious or spiritual advisors, or get counseling or support from others who have had a similar experience.  Also, hospice programs, described elsewhere in this brochure, specialize in caring for terminally ill patients and their loved ones.

When a Patient has a Terminal Illness

When a patient is told he or she has a terminal illness it can be frightening and overwhelming.  The patient may feel there is nothing more to do, but there are still choices to be made. 

It is important to have a partnership with your health care provider, as he or she can provide needed care and can educate you on what to expect.  Even though your illness may not be curable, there is care that can provide comfort. 

Tell your health care provider what is important to you and how you want to be treated through each stage of your illness.  Make a list of questions and concerns and have a friend or family member go to appointments with you.  Having another person can help in asking questions and in understanding what is being said.  If there is something you do not understand, ask that it be explained more clearly. 

Along with medical care you may want to seek emotional, physical, and spiritual care.  Other professionals that can be of help are listed under the section “Home Care Programs.”

The assistance of friends and family members can be important not only for you, but also for your loved ones.  People often want to help, but are uncertain how to ask or what to offer.  You, or someone close to you, can make a list of needs.  These needs might include spending time with you or going to appointments, providing meals, assisting with legal and estate matters, gathering medical information, running errands, organizing bills and other paperwork, doing laundry or yard work, and arranging for home care services. 

You may choose to face your illness with the help of only a few close loved ones or to involve a wider community of support.  It is important to take part in deciding when and how you want help from others. 

You might choose life-prolonging treatment or at some point you may decide to limit such treatment.  You might choose to have medical care in a hospital or, if possible, you may want to remain in your home.  Programs like hospice, home health agencies, or nurse registries can provide some medical and support services in the home.

Special Concerns

When Death is Sudden and Unexpected:

Whatever the cause, sudden death can leave survivors in shock, intensifying feelings of grief and loss.  There is no time to say good-bye or to show the person how you feel.  In addition, if the person who died did not prepare in advance, funeral services will have to be arranged quickly, maybe without knowing what the person would have wanted.  You may have to straighten out legal and financial matters requiring a lot of work and time. 

When a Child Dies:

Parents, grandparents, brothers or sisters, and other relatives and friends can experience a wide range of intense emotions when a child dies.  You may blame yourself or repeatedly replay the event in your mind in hopes of changing the outcome.  It may help to talk with others who have lost a child.   

The Compassionate Friends is a national support organization that offers friendship and understanding to grieving family members who have lost a child.  They have a national website and local support groups throughout the United States.  For more information view their website at www.CompassionateFriends.org or call their toll-free number (877) 969-0010.

When Death is the Result of Suicide:

The grief that survivors of suicide feel can be overwhelming.  You might wonder if you could have done something to prevent the suicide.  For more information you may want to contact the following organizations:  Survivors of Suicide (www.SurvivorsOfSuicide.com), the American Association of Suicidology (www.suicidology.org, 202-237-2280), or the National Hopeline Network (www.hopeline.com, 800-784-2433).  For support resources in your local community try calling the phone number 211.  This is a referral service available in many Florida communities and they can tell you about possible support groups and other services in your area. 

When Death is the Result of Criminal Violence:

Dealing with the results of criminal violence can be an emotional and confusing experience.  The person who brought on the violence may never be found or, if the person is arrested, you might choose to participate in what is usually a long legal process.  Many law enforcement departments and state attorney offices have a victim advocacy program that assists survivors of a murder victim.

The Division of Victim Services at the Florida Attorney General’s office has a fund for financial assistance to innocent victims of crime.  If your loved one was a murder victim, his or her immediate family may be eligible for financial help for some lost income, mental health services, and funeral expenses.  See the Resource Directory for contact information.

Medical Concerns

The medical needs and concerns of a terminally ill patient will likely change as the patient’s illness progresses.  This section looks at medical concerns, including questions for your health care provider, pain management, and home care programs.

Questions for Your Health Care Provider

It is important to have open and comfortable communication with your health care provider.  If you are direct about what you need it will make it more likely you will receive the kind of care you want.  Also, if you do not understand something that is said to you, ask that it be more clearly explained.

Questions to ask might include:

You have the right to decide how much treatment you want.  Do you want the medical staff to do everything medically possible to extend your life?  Do you want care given only for comfort and to reduce pain?  If you say you want a certain level of treatment, and even if you put those choices into writing, you still have the right to change your mind at any point.

Pain Management

If the illness is going to cause pain, it is very important that pain be talked about and managed as best as possible.  According to the National Foundation for the Treatment of Pain, and other health care organizations, patients in the United States often are under treated for pain.  You can suffer unnecessarily when you or those providing your health care are uncertain about appropriate medication dosage or if they do not understand your level of pain. 

Pain management needs to be responsive to the needs of each patient.  It needs to include good communication between you and the medical staff involved in your care.  Talk with your physician or nurse if you feel you are not receiving the best level of pain management.  You can also request a second opinion on treatment options.

Some resources on pain management include:  the National Foundation for the Treatment of Pain (www.PainCare.org, 713-862-9332) and the American Academy of Pain Management (www.aaPainManage.org, 209-533-9744).  Also, hospice programs have expert experience with pain management.

Home Care Programs

Hospice provides a coordinated program of professional and volunteer services for patients with a terminal illness.  Staff members are specially trained to assist you and your loved ones in dealing with end-of-life issues.  They offer palliative care, which provides comfort and relieves pain and other symptoms when there is no cure available.  Hospice allows you to die with dignity, respecting your values and encouraging you and your loved ones to be involved in the decision making process all along the way.  The goal is to provide a good quality of life while preparing for the end of life. 

To be eligible for hospice services a patient must have a prognosis of living six months or less.  If a patient lives beyond six months after admission they can continue to receive services as long as the doctor continues to document the patient’s eligibility.  Hospice services are often not fully used because most people turn to hospice only during the last two to six weeks of the patient’s life, though they could have the services for much longer.

Hospice services can be provided in the following:

Services can include:

Grief counseling and support continue to be available to loved ones after the patient dies.

Employees in home health agencies and nurse registries can also provide some of the services provided by hospice.  However, their employees may not be specially trained to assist with end-of-life issues, like hospice.  Home health agencies and nurse registries can provide the following:  services from a nurse, certified nursing assistant, home health aide, and homemaker.  In addition, a home health agency can provide physical, speech, occupational and respiratory therapy; home medical equipment; nutritional counseling; and social work services.

Services through home care programs can be paid by private funds or by some insurance policies.  In addition:

For more information view the Medicare website www.Medicare.gov or call the toll-free number (800) 633-4227 (TTY 877-486-2048).  To apply for Medicaid check the phonebook for the local listing of the Florida Department of Children and Families or go to www.MyFlorida.com/cf_web.  To find out about Medicaid services view the Agency for Health Care Administration website http://ahca.MyFlorida.com (click “Medicaid”) or call the toll-free number (888) 419-3456.

For more information on home care programs see the AHCA brochure, “Home Health Care in Florida.”  This brochure is available at www.FloridaHealthFinder.gov (click "Brochures and Guides”) or by calling the toll-free number (888) 419-3456.  You can get a list of licensed Florida home care programs in your area by calling the Elder Helpline toll-free number (800) 963-5337 or viewing the website www.FloridaHealthFinder.gov (click “Find Facilities”).

Legal and Practical Concerns

We all have the chance to make some plans in advance of a terminal illness or an unexpected death, and to discuss these matters with the significant persons in our lives.  This section looks at health care advance directives, Do Not Resuscitate Orders, durable power of attorney, wills, and tips for getting organized.

Health Care Advance Directives

A health care advance directive is a paper that expresses a person’s wishes about his or her health care, or a written form directing an anatomical donation after death.  Advance directives, as the term indicates, are written in advance.  Some people write them when they are diagnosed with a life-threatening illness.  Others put their wishes into writing while they are healthy, often as part of their estate planning, like writing a will or buying life insurance. 

Types of health care advance directives include:

It is important that any health care advance directive be witnessed by at least two individuals.  Laws on advance directives are in Chapter 765 of the Florida Statutes (Available at your local library or at www.leg.state.fl.us).  The Chapter includes samples of a living will, designation of a health care surrogate, and donor of anatomical gifts.  You can hire a lawyer to write this document or you can refer to the Florida Statutes for examples. 

You can also use our publication, “Health Care Advance Directives – The Patient’s Right to Decide.”  This publication is available at www.FloridaHealthFinder.gov (click “Brochures and Guides”) or by calling the toll-free number (888) 419-3456.

Other organizations also provide advance directives.  One is “Five Wishes” that includes a living will and a health care surrogate.  Five Wishes is distributed by Aging with Dignity (www.AgingWithDignity.org, 888-594-7437). 

Other Forms:

Tips to Help You Get Organized

Grief and Loss

You and your loved ones will probably go through a wide range of feelings.  There is no right or wrong way to grieve, and each person will have his or her own way and time for grieving. 

Grief and loss can begin before a patient dies and, for survivors, can continue long afterwards.  Holidays, birthdays, anniversaries, certain activities or locations, even smell and taste can bring on a sudden sense of loss and grief.  In our fast paced society others might expect we should move quickly through grief and put it behind us.  But grieving can be a slow passage that moves through many changes.

You might choose to grieve alone or might want the support of loved ones.  You might become active in your community or with hobbies, to help you through the grieving process.  You may turn to your religious community or draw on your spirituality to help you through.  Other resources include books, support groups, or counseling. 

Almost all hospice programs offer grief and loss services to anyone in the community, even if the patient did not receive hospice services.  Organizations that have information on dealing with grief can be found in the section “Facing Death” and in the Resource Directory.

Final Arrangements

Often people do not think about final arrangements until after a person has died.  Then decisions are required to be made quickly during an emotional and stressful time.  It is possible to plan ahead by discussing your wishes with the significant person (or persons) in your life and writing down how you would like things to be handled. 

You can pay in advance for a burial site, cremation, and/or funeral services through a pre-need contract with a funeral home, crematory, or cemetery.  Or you might decide in advance to donate your body to science.  The information in this section can help you think about what you would like.

Funeral Services

People usually think of funeral services as the viewing at the funeral home and a graveside service.  However, the services can include many choices. 

Funeral costs include the basic services of the funeral director and staff.  This covers funeral planning, getting necessary permits and the death certificate, sheltering the remains until the burial or cremation is completed, and coordinating with the cemetery, crematory, or other third parties. 

Additional services include transporting the remains, embalming, use of the funeral home for viewing or a memorial service, graveside service, use of a limousine, a casket, grave liner (a container that either covers the top and sides of the casket or completely encloses the casket), and cremation or burial. 

These additional services can vary in price among funeral homes and not all of the services are required.  For example state law does not require embalming, but if there is going to be a viewing, the funeral home will probably require it.  A grave liner is also not required, but a cemetery can include it as part of their contract.  A viewing, memorial service, graveside service, or use of a limousine is not required. 

There also can be cash advance charges for goods and services the funeral home buys for you from outside vendors, such as flowers, obituary notices, pallbearers, clergy, and musicians.  These services also can vary in price and are not required.

Since there are choices about the services you can buy be sure the funeral provider clearly explains all of them.  Make it clear to the provider which services you want or do not want.

Many funeral providers offer a variety of packages that include certain goods and services.  These packages might include services you do not want.  You are not required to accept a package deal and instead can buy only the individual goods and services you choose. 

You also can buy products and services from different businesses.  For example, you can buy a casket from one source and then arrange the funeral service through another.  A funeral home cannot charge a handling fee if you buy the casket from another source.  You can compare services and prices, and choose the business with which you feel most confident and comfortable.

Arranging funeral services can be emotional and difficult.  You might be influenced to pay more than you want or can afford.  The Funeral Rule, enforced by the Federal Trade Commission, requires funeral directors to give you in person or over the phone a detailed price list of their services and all products they offer.   

If a funeral home does not show you lower priced items, such as a simple pine casket, you may want to ask to be shown these.  If they do not have what you want, you can contact another provider.

Burial

Burial involves several choices.  A person can be buried in a casket, which can range from an unfinished wood box to an elaborate metal casket.  The remains from a cremation can also be buried.  Burial can be in the earth, in a mausoleum (a building above ground), or in a columbarium (a structure for cremated remains, that can stand alone or be part of a mausoleum).  Costs can include:

A direct burial is when the deceased is buried shortly after death.  Direct burial is less costly because there is no viewing at a funeral home, there is no need for an elaborate casket, and embalming is not necessary.  You can still hold a memorial service (without a viewing) at your home or in a religious building, funeral home, cemetery, or other location.

Questions in choosing a cemetery site might include:

Cremation

Cremation is done through a heat process where the body is reduced to ashes and bone fragments, which are referred to as cremated remains or cremains.  A casket is not required for a cremation, but an alternative container will be used to hold the deceased during the cremation.  This can be an unfinished wood box, a cardboard box, or a container that covers the entire body and is rigid enough for handling.  After cremation the cremains can be placed in a simple box provided by the establishment, or a decorative urn can be bought or provided by you.

Cremation can be done through a funeral home or a direct disposal establishment.  When done through a funeral home a viewing at the funeral home can be a part of the service, if so desired, prior to cremation.  If you choose to do this it may be possible to rent a casket for the viewing and then have the body cremated in an alternative container.  A viewing cannot be held if you use a direct disposal establishment. 

Direct disposal establishments are licensed to transport and store the deceased until the cremation is carried out, complete the death certificate, cremate or arrange for cremation, obtain the necessary permits for direct disposal, and arrange for newspaper obituaries.  These establishments cannot carry out other responsibilities of a licensed funeral home.  To find out if there is a direct disposal establishment in your area check the phone book or contact the Florida Department of Financial Services.  (See the Resource Directory).

Direct cremation is less costly because there is no viewing at a funeral home, there is no need for an elaborate casket, and embalming is not necessary.  You can still hold a memorial service (without a viewing) at your home or in a religious building, funeral home, cemetery, or other location.

After cremation the cremains can be buried in a gravesite, be placed inside a columbarium or mausoleum, be taken home, or be scattered in a favorite spot.

Burial at Sea

Active military personnel and veterans can have their bodies or their cremains buried at sea by the Navy.  For more information call the U.S. Navy’s mortuary program at the toll-free number (888) 647-6676.

Private citizens can arrange for burial at sea through a funeral home, a crematory, or they can arrange it themselves.  If you want to arrange it yourself, please review the Federal Environmental Protection Agency’s website (www.epa.gov/region02/water/oceans/burials.htm) for conditions that need to be met for burial at sea.

Anatomical Donation

You can make an important gift to seriously ill people or to the education of health care professionals by agreeing in advance to make an anatomical donation when you die.  Anatomical donations can include organ and tissue donation to persons in need or donation of your body for medical training and research. 

You can indicate your choice to become an organ and tissue donor by having it put on your driver’s license or state identification card (at your nearest driver’s license office).  More information on organ and tissue donation is available at http://ahca.MyFlorida.com or on the federal website www.OrganDonor.gov.  You can also call the Florida Organ and Tissue Donor Education Program at (850) 414-0359. 

Another choice is to donate your body for medical training and research.  The Anatomical Board of the State of Florida coordinates donations to medical schools in the State of Florida.  For more information view the website of the Anatomical Board of the State of Florida at www.med.ufl.edu/anatbd or call the toll-free number (800) 628-2594. 

To donate your body for medical training and research you, or your survivors, must arrange with a local funeral home and pay for an embalming and transportation of the body to the Anatomical Board located in Gainesville, Florida. 

After being used for medical education or research, the body will usually be cremated.  The cremains will be returned to loved ones, if they requested that at the time of donation, or the Anatomical Board will spread the cremains over the Gulf of Mexico.

If you decide you want to make an anatomical donation be sure to let your loved ones know as it will better assure that your wishes will be carried out the way that you want.  If you change your mind and want to cancel it contact your local driver’s license office about organ donation and the Anatomical Board about body donation.

Pre-Need Contract

Some people plan their own final arrangements and sometimes pay for them in advance.  A contract can be made with a funeral home, cemetery, and/or a direct disposal establishment.  Such arrangements can be made when one is healthy and not pressed with the emotions of a life-threatening illness.  Such pre-arrangements can help the surviving loved ones during their time of grief and loss.

If you have a pre-need contract for funeral services it is important to tell the significant person (or persons) in your life who the contract is with, what it covers, and where the contract paperwork is filed.  In the event of your death, the paperwork will be easy to find and arrangements can be carried out according to your plan.

Questions in considering a pre-need contract might include:

The business offering a pre-need contract is required to secure it in a trust fund or with an insurance policy.  If the company does not honor the contract your survivors can ask for help through the Florida Department of Financial Services (see the Resource Directory).  If the holder of the contract tries to collect more money to carry out the services, report this to the State’s Funeral and Cemetery Hotline at the toll-free number (800) 323-2627.

If you do not want to enter into a pre-need contract, but would like to financially prepare for your funeral services, you can save money towards this cost.

Financial Considerations

Funeral expenses can range anywhere from $1,000 to $10,000 or more, depending on the choices you make.  A cremation with no viewing at a funeral home and no burial will be less expensive than a funeral with the full range of services.  A direct burial also can be less expensive.  Before making arrangements consider what is important to you and your loved ones, how much you can afford, and what you wish to spend. 

If you have earned enough Social Security credits, there is a special lump-sum benefit payment of $255 that can be paid at the time of your death to your husband/wife or minor children if they meet certain requirements.  For more information contact the Social Security Administration listed in the Resource Directory.

Active military personnel, veterans, and their husbands/wives and dependent children are entitled to a free burial, grave liner, grave marker, and everlasting care in a national cemetery.  There is no charge for opening and closing the grave, or for setting the marker in a national cemetery.  In addition, active military personnel and veterans are eligible for burial at sea, or for a grave marker in any cemetery in the world.  These benefits are also available to some civilians who provided military-related service and to some U.S. Public Health Service personnel.  For more information contact the U.S. Department of Veterans Affairs National Cemetery Administration, listed in the Resource Directory.

Additional Concerns

Resource Directory

Cremation Association of North America
www.CremationAssociation.org
(312) 245-1077

Federal Trade Commission
www.ftc.gov
(877) 382-4357

Florida Attorney General
http://MyFloridaLegal.com
(866) 966-7226 or (850) 414-3300

Florida Department of Financial Services
www.fldfs.com
(800) 342-2762
Funeral & Cemetery Hotline:
(800) 323-2627

Florida Hospice and Palliative Care, Inc.
www.FloridaHospices.org
(850) 878-2632
(800) 282-6560 (Referral Line)

Growth House, Inc.
www.GrowthHouse.org

International Cemetery, Cremation, and Funeral Association
www.icfa.org
(800) 645-7700

National Funeral Directors Association
www.nfda.org  
(800) 228-6332

Social Security Administration
www.ssa.gov
(800) 772-1213 or (TTY) 800-325-0778

U.S. Department of Veterans Affairs
National Cemetery Administration
www.cem.va.gov
(800) 827-1000

Additional Consumer Brochures Include:

For additional copies of this brochure, or others in the series, please contact the AHCA Call Center’s toll-free number (888) 419-3456.  To view or print any brochure in the Consumer Awareness Series, please visit www.FloridaHealthFinder.gov

Additional brochures in the Consumer Awareness Series include:

This brochure may be copied for public use.  Please credit the Agency for Health Care Administration for its creation.

If you have comments or suggestions, please call (850) 922-5771.

The Agency for Health Care Administration created the following websites to help Florida residents be well informed health care consumers.

www.FloridaHealthFinder.gov provides search tools to compare short-term acute care hospitals, ambulatory (outpatient) surgery centers, health plans, and nursing homes. The site includes the A.D.A.M. Health Encyclopedia with thousands of articles and illustrations. The site also provides a list of health care facilities; information about insurance, medications, seniors, medical conditions, and resources for medical care; a variety of consumer publications; information for health care professionals; and much more.

www.MyFloridaRx.com
This website compares prices for the most commonly used prescription drugs in Florida.

http://ahca.MyFlorida.com
This website includes information on health care facility regulation and licensing, the Florida Medicaid program, managed care (HMOs), and other topics related to the Agency for Health Care Administration.

A picture of a health care worker smilng towards us.

Help for Florida Consumers.

my florida logo myflorida.com Agency for Health Care Administration
end of graphical look of the webpage