©Family Caregiver Alliance

Americans are a people who plan. We plan everything: our schedules, our careers and work projects, our weddings and vacations, our retirements. Many of us plan for the disposition of our estates after we die. The one area that most of us avoid planning is the end of our life. Yet, if we don't plan, if we don't at least think about it and share our ideas with those we love, others take over at the very time when we are most vulnerable, most in need of understanding and comfort, and most longing for dignity.

Big issues confront us when we think about our own death or that of someone we love. Our attitudes and beliefs about religion, pain, suffering, loss of consciousness, and leaving behind those we love come into play. We can let things unfold as they may, and for some of us that's exactly right. For others of us, it is good to plan.

This Fact Sheet is not intended to provide a comprehensive planning tool. It outlines areas we need to think about and resources that can help, whether we are caring for someone who is already incapacitated, or making decisions for ourselves.

How to Begin

Begin simply? with yourself. Try to confront and understand any fears you might have: do they relate to the possibility of pain? Loss of dignity while undergoing treatment? Not being clearly understood by those around you? Being alone? Being overly-sedated or in a lingering state of unconsciousness? Leaving loved ones or unfinished projects behind? Leaving your loved ones without adequate financial resources? Dying in a strange place?

Once you know that you want to explore these topics and make some plans, most experts suggest that you begin by talking. Talk openly to family and friends about your values and beliefs, your hopes and fears about the end stage of your life and theirs. Someone who is uncomfortable with the subject can be led to talk with indirect topics. Use "openings" in conversations, such as recalling a family event and talking about a future event where you might not be present. Talk about whom you wish to leave a possession to, whom you'd like to have near if you were seriously ill.

Ask your doctor for a time when you can go over your ideas and questions about end-of-life treatment and medical decisions. Tell him or her you want guidance in preparing advance directives. If you are already ill, ask your doctor what you might expect to happen when you begin to feel worse. Let him or her know how much information you wish to receive about your illness, prognosis, care options, and hospice programs.

Discuss with your lawyer and/or financial adviser whether your legal and financial affairs are in order. Talk to a religious adviser about spiritual concerns.

What do you need to talk about?

Specific issues relate to the end of one's life. They include:

• Whom do you want to make decisions for you if you are not able to make your own, both on financial matters and health care decisions? The same person may not be right for both.
• What medical treatments and care are acceptable to you? Are there some that you fear?
• Do you wish to be resuscitated if you stop breathing and/or your heart stops?
• Do you want to be hospitalized or stay at home, or somewhere else, if you are seriously or terminally ill?
• How will your care be paid for? Do you have adequate insurance? What might you have overlooked that will be costly at a time when your loved ones are distracted by grieving over your condition or death?
• What actually happens when a person dies? Do you want to know more about what might happen? Will your loved ones be prepared for the decisions they may have to make?
  

Taking Control

Financial Decisions

Sometimes the easiest place to begin taking control of planning is in your estate and finances because the content is more concrete. Make sure you have a valid, up-to-date will, or trust documents if desired or needed. A durable power of attorney for financial affairs is a legally binding document that you prepare, or have prepared for you to sign, that designates a trusted person to act for you if you become incapacitated. A lawyer should help you complete these documents.

Keep all your insurance information ? medical, long-term care, life and special needs policies ? in an accessible place. Tell a trusted person where these documents are located. You should also think about, and write out, instructions for your funeral, burial or cremation preferences, and how they will be paid for.

Keep a list of your documents in an accessible place, and either give a copy to a trusted relative or friend or let them know where they can find it when needed. (See Where to Find My Important Papers on FCA's web site, www.caregiver.org/work&eldercare/papers.html.)

Medical Decisions

Medical advances make it possible to keep a person alive who, in former times, would have died more quickly from the serious nature of their illness, injury or infection. This has set the stage for ethical and legal controversy about the patient's rights, the family's rights and the medical profession's proper role. To complicate matters further, the state also has an interest in protecting its citizens from harm.

Each American has the constitutional right, established by a Supreme Court decision, to request that medical treatment be withdrawn or withheld. The right remains valid even if you become incapacitated. Another aspect of end-of-life decision-making is the right to insist on receiving, rather than refusing, treatment. This issue relates to "medical futility," when medical personnel deem further treatment to be useless except if in the nature of comfort or palliative care.

To begin, understand that you have the right to make your own decisions about your care. You can also appoint an "agent" to be your proxy or surrogate should you become incapacitated. In the event you become legally incapacitated (which may require involvement of both medical experts and a court of law) very specific legal steps must be followed before decisions about your care are made.

All states have adopted laws that make it easier for you to plan for the care you wish to receive should you not be able to communicate these wishes in the future. These means are called "advance directives" and take different forms in different states. No one can force you to sign a directive, but they are a helpful tool for you and for those who must step in for you.

Care Options

Most people do not die traumatically. Instead, the last days of their lives are spent in a hospital, nursing home, or in their own home. In your advance directive (see below), you can state your preferences about where you wish to be in the event of terminal illness or during the process of dying. If you choose to be at home, many home care options are available, including home health and custodial care.

Hospice care?a program designed to aid the person who has been given only a short time to live and his or her family?can be provided in the home or in a facility, depending on the program. Hospice is an interdisciplinary approach that can enhance the quality of life. Pain control and emotional support for family members as well as the person who is ill are key elements of hospice. Contact your local hospice program or national association for more information.