The best way to ensure that you receive the care you want at the end of your life is to make and clearly communicate decisions that set forth your wishes and values. Similarly, if you have not already done so, now is the time to make decisions about the disposition of your property and the care of any dependents you may have, such as your children. Making these decisions in the form of legal documents and talking with your loved ones and your health care team is the best way to do this.

Health care decision-making. In 1990, Congress passed the Patient Self-Determination Act (PSDA), a law that requires hospitals, nursing homes, home health agencies, HMOs and hospices to inform all patients about their rights under state law to prepare advance health care directives about life-sustaining medical treatments. Your health care institution is required to make you aware of this right — but it is up to you to take the time and thought to create the guidelines for your own care.

Before you can complete legal documents to reflect the end-of-life care that you want, you may need some time to think through what is important to you at the end of your life — and then perhaps have conversations with people closest to you to discuss your wants and needs. This includes your family and loved ones who may be caring for you or who will be involved at the end of your life, as well as your health care team, so they are aware of the care you do and do not want in your final days.

The conversations with your loved ones can be done in a way that suits you best — either in an organized discussion or informally — where you share your thinking about what you want in end-of-life care if the time comes when you can no longer express your wishes. It is especially important to talk with the person or people you want to make health care and perhaps financial decisions for you if you cannot make them.

People close to you, especially those who may need to make decisions, need to know what you want, and where to find any legal documents. Letting your physicians and other key members of the health care team know about your end of life wishes is important, as well.

Special wishes. This is also the time to let loved ones and your health care team know about any special wishes you may have, such as organ donation or donating your body to a medical institution for scientific research. Be sure you also fill out any required forms and paperwork on these matters, so your wishes can be acted upon when you die. Your health care team can help obtain the forms you'll need.

Key issues to decide include:

• What person will you choose to make decisions for you if you can no longer do so? Might you want one person to make financial decisions, and another to make health care decisions? (Of course you can choose one person to do both, if that meets your needs.)
  
  
• What medical treatment do you want — and not want? For example, in light of your terminal illness, if your heart stops beating, do you want efforts made to restart your heart? If so, under what circumstances? If not, under what circumstances? If you cannot breathe on your own, do you want to be placed on a respirator? Do you want to receive nutrition artificially (by tubes) if you can't eat or drink? You may also want to consider the limited use of such treatments — continuing them for a period of time if they help, and discontinue them if they do not.
  
  
• What would make you comfortable while you are dying? How and where do you want to be treated?
  
  
• What do you want those you love to know about you and your feelings for them after you are gone?

Not all of these issues need to be addressed in an advance directive, — but this list includes the kinds of decisions you’ll need to make about the end of your life. Taking the time to think these things through, and sharing your thoughts about them, will be very helpful to those who care for you, and for your own peace of mind.

Advance Directives

Advance directives are documents that clearly state what kind of health care you want and do not want, if you can't speak for yourself. They are called "advance" because decisions are made by you, while you are able to do so, and before the document is needed.

Preparing an advance directive does many good things:

• It provides you peace of mind, knowing that if you are not able to communicate what care you want in a health care emergency, your wishes will still be carried out.
  
  
• It provides your loved ones with clear directions for your care. This is a great gift to your family, and means they won't have to try to guess what care you would and would not want, at a time when they will be under great emotional stress. It can also prevent family arguments about what is best for you.
  
  
• It enables your health care providers to make clear decisions that they know reflect your final wishes.

Advance Directive Components: Living Will & Durable Power of Attorney

There are two kinds of advance directives for health care, and in general, you should have both.

You can use standardized forms (see information on obtaining the forms below) or create documents with the assistance of an attorney. To assure validity, these documents should be signed by you, dated and witnessed. Each form will have instructions for correctly completing it.

The living will is a message from you to your health care providers in regard to the kind of care you do and do not want if you can no longer make your own decisions. The topics usually covered in a living will include directives about artificial feeding, use of a respirator if you cannot breathe on your own, and whether or not you wish to have cardiopulmonary resuscitation (CPR) if your heart stops. You don't have to respond to every question in a standardized living will format; if you don't answer, then your health care provider will make those decisions. Also you can add more information detailing what you do and do not want on these forms. Many living will standard forms are vague, and so it is up to you to add the details that make it appropriate for your care, as you want it.

A living will form does not name a person who will be responsible for your care decisions if you are not able to make them; for this, you also need a durable power of attorney, discussed below.

Bear in mind that having a living will that limits care in some areas does NOT mean that you will no longer receive care. You are entitled to medical care to make you comfortable as long as you are alive, and your legal documents do not change that.

The durable power of attorney for health care designates another person to act as your representative in making medical decisions for you if you cannot make them. It is simpler than a living will, in that it usually just states that if you are unable to make your own health care decisions, you want the person you name in the document to do so for you. This document does not have a list of the kinds of care you do and do not want.

The person you choose to have your health care power of attorney should be someone you trust and who agrees with your views about end-of-life medical care. This should also be a person who has agreed to accept this important responsibility

As you can see, the more detail you provide in your living will, the easier the decision-making will be for the person you name in your durable power of attorney.

Both your living will and durable power of attorney can be reversed or changed by you at any time, orally or in writing. Obviously, if you decide to change the terms of your living will or durable power of attorney, it's important to let all those caring for you know.

Some states are now creating single documents that encompass the aspects of both kinds of documents; check to see how your state operates.

Making sure your wishes are followed. An advance directive that is not known to your family and other loved ones, as well as your health care team and the hospital where you usually receive treatment, is not doing its job. To be honored, it must be known. Literally everyone involved in your care — family, friends, health care team members — should know you have an advance directive and where it is located. Family members responsible for your care, as well as your attorney, should have copies as well.

This document should also be part of your health care file wherever you are treated. Locations might include your hospital, nursing home if applicable, and hospice, as well as your physician's records. If you have lived in an assisted living facility, the advance directive should be in your records there as well.

One individual facing death was so concerned that his advance directive wishes be followed that he placed a copy of the signed document in his bedside table. It's a good idea. An advance directive that no one can locate quickly is not helpful and interferes with having your wishes followed.

A special note: Having a will and/or power of attorney governing other aspects of your life does not cover health care decisions. Health care decision-making must be covered separately, in the kinds of documents described above.

Finding information. At this point, there is no single Advance Directive form or forms that works in all fifty states. Here are two reliable sources for obtaining state-by-state forms, either by mail or by downloading from websites:

US Living Will Registry
523 Westfield Ave./P.O. Box 2789
Westfield, NJ 07091
1-800-LIV-WILL (548-9455)
E-mail: admin@uslivingwillregistry.com
www.uslivingwillregistry.com

Partnership for Caring
1250 Eye St. NW, Suite 202
Washington, DC 20006
202-296-8071
E-mail: pfc@partnershipforcaring.org
www.partnershipforcaring.org

Settling Your Estate

This website is about health care, not legal matters. However, it may be useful to provide a very brief overview of some topics that become especially important at the end of life.

Separate from your Advance Directive, your "legal" will or other document created to govern the distribution of your estate, such as a living trust, is the method used to set forth your wishes about your dependents, if any, and the disposition of your assets, such as property and money.

Dying intestate (without a will). If you do not have a will or other legal document setting forth your wishes, the laws of the state where you live will determine what happens to your property and dependents. For some people, this may be sufficient. But for others, especially with large estates, minor children or many surviving family members, this can be a complex and expensive process. Dying without some clear and legal statement of your intent regarding your property and dependents can create an undesirable, costly and time-consuming mess for those you leave behind. Further, it erases your wishes — since it is unlikely that state law about what happens to your property and dependents will be the same as you would have chosen. For most people, a will is a good idea — and to make the decision, consult an attorney about your situation.

Wills

For the most part, since a will is a legal document that may be complex, it is best to prepare your will with the assistance of an attorney (preferably an estate attorney who has expertise in this area) who is familiar with the laws of your state.

The executor. In preparing a will of any kind, one very important part of the process is to name an executor — sometimes called a "personal representative" — to be the individual responsible for seeing that your wishes, as set forth in your will, are carried out. Your executor can be anyone you choose or even a financial institution, but should be a person or institution you believe will do the best job of managing this task for you. Your executor should agree, before you die, to take on this responsibility, and you may wish to have a thorough discussion of the will or other document you are using. Your executor will need to manage the estate, settle all outstanding debts and make sure the property and other items in your estate are distributed according to your wishes.

Creating a will. There are three basic ways to create a will:

• The handwritten, or "holographic" will is a will written in your own handwriting, without the assistance of an attorney. Not all states consider holographic wills valid, and those that do so may have strict conditions under which the will can be considered valid. This kind of will must be written, dated and signed entirely in your handwriting. Having a witness is not required.
  
  Experts in estate planning generally disapprove of handwritten wills, because probate courts (the courts where wills are reviewed and managed) are often reluctant to consider these documents valid. A handwritten will is better than nothing, to be sure, but it is somewhat risky for all concerned.
  
  
• The formal witnessed will — this is the traditional will, generally prepared by an attorney, that is dated, signed and witnessed. It is drafted to comply with the laws of the state where you live (and die). The length and complexity of a traditional will depends on what you wish to do with your property.
  
  
• The statutory or "fill-in-the-blanks" will — this enables a person to basically use a form considered legal in his or her state to set forth wishes about property disposition. These forms generally cannot be altered in any way, and are most useful for people with very few assets or a very basic plan for disposition of those assets.

Living Trusts
A living trust is a document setting forth your wishes in regard to your estate that is designed to avoid probate court, thereby saving money that would have been spent on attorney fees and court costs. If your estate is large, these savings can be considerable.

A living trust basically means you transfer all of your property into a "trust," which is controlled by a "trustee" — yourself. You are able to benefit yourself from your trust while you live, and to name others to benefit in the event of your death. By transferring your property from your personal holdings to the holdings of a trust, you can avoid probate altogether for your heirs, while at the same time controlling your property while you are alive.

There are various kinds of living trusts, and you should work with a qualified estate attorney in establishing a trust that suits your needs. Living trusts generally require attorney assistance to create. In many cases, you may also need a simple will to handle any property that is not made a formal part of the living trust.

There are also other means of avoiding probate court, and these can be explained to you by your attorney.

In Remembrance

Each of us wants to be remembered, especially by those we love and who love us. While we know that real and lasting remembrance takes place in our loved ones' hearts and minds, not in an outward show of a funeral or memorial services, it is nonetheless important that our passage from this world be marked by a ceremony of some kind.

Why? Because such a service is shown to comfort those we leave behind. It's an opportunity for others in our lives to comfort and console those closest to us, to share warm memories and to express love, to remember us and to celebrate our lives and accomplishments. A memorial of some kind matters, so if possible, resist the temptation to tell your loved ones that you don't want them to have an event of any kind, in the generally mistaken notion that your death will be easier for them that way.

In general, while you can take some steps to make providing your funeral or memorial at bit easier for your family and friends, it's important to bear in mind that doing this work will not make the grieving process any easier for your loved ones. Grief is grief, and even when we face the end of life of a loved one for months or even years, we will still mourn when the end finally comes.

However, letting your loved ones know what you are thinking about your final arrangements is a kindness, if difficult to do. Do you want to be buried or cremated? If the latter, where might your ashes be scattered, if you want that to happen? If you are to be buried, where should that take place? And you may want to discuss the kind of funeral you want, be it in a funeral home, your church or other house of religious worship — or perhaps a private burial with a memorial reception or other event afterward. There are many variables. Some people find great comfort in spending time planning the details of their funeral, including selection of beloved music, prayers, and other details.

This conversation with your loved ones will not be easy for them or for you. However, as you begin this conversation, remember that by expressing your wishes to them now, before you die, you will spare them the need for making difficult decisions at your death — decisions they must make in a time of grief. By setting forth your views on managing your death and celebrating your life, your family is supported and loved by you, right to the end.

The obituary. In general, it is helpful for all concerned to have your obituary written before you die. Assembling all of the necessary information for an obituary can be difficult and stressful for your loved ones after your death, when their grief is fresh, so thinking this through ahead of time is very helpful.

While each newspaper has its own format for obituaries, there is some standard information that you can, with your caregivers if necessary, assemble:

• Name of the deceased
  
  
• Cause of death (not all newspapers permit this)
  
  
• Location at the time of death
  
  
• Facts about the deceased person's life — education, work and positions held, publications, awards and other items of special note. (This part of the obituary will vary considerably, depending on each individual's life, accomplishments and the requirements of the newspaper.)
  
  
• Survivors (usually the immediate family)

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