Advance Directives
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Getting One's Affairs in Order One important aspect of living well is having a sense of control over your affairs. This guide has been prepared to help you organize important information which will be needed by you and your loved ones in the future. Taking the time to collect this information expresses your concern for your loved ones. Perhaps more importantly, reviewing this information may encourage you to consider end of life issues now, while you can discuss them with loved ones and make your wishes known. Healthcare Proxy and Living Will What steps can we take so that the end of our lives are focused on dignity, with comfort and respect? The best way to avoid clashes between medical technology and patient/family wishes is to complete the advance directives--the health care proxy and the living will. By New York State law, you can appoint a Health Care Proxy to make decisions about your medical care - including decisions about life support - if you can no longer speak for yourself. Once you have identified a trusted individual, formalize this designation by completing the New York State Health Care Proxy document. Give a copy to your agent, your lawyer and your physician. Complete and keep a wallet sized health care proxy with you at all times. Hospice of Central New York will be happy to mail you a proxy form designed by the New York State Department of Health, as well as a convenient wallet-size form. Send your request to: You can request a form by sending an e-mail to This e-mail address is being protected from spambots, you need JavaScript enabled to view it This e-mail address is being protected from spambots, you need JavaScript enabled to view it . Please include your name and address in the e-mail request. To request a form by phone, call 315-634-1100 Detailed information on the healthcare proxy and its form is present at The NY State Department of Health website: http://www.health.state.ny.us/ A Living Will gives guidance to your proxy as to what medical treatment you would or would not have wanted in particular situations. New York State requires clear and convincing evidence of an incapacitated patient's wishes to withdraw or withhold treatment. The Living Will can provide this evidence of your wishes. Due to the complexity of illnesses and treatment options, it is not always possible to make clear through the Living Will what your decision in a particular sitation would be. In such cases, the Health Care Proxy document designates the person who will make the decision for you. Hospice of Central New York strongly recommends that you complete both of these documents to best ensure that you receive the medical care you want in case you can no longer speak for yourself. While these decisions need careful consideration, it is very simple to complete a health care proxy document and a living will. You do not need a lawyer, and the forms do not need to be notarized. They must, however, be signed by two witnesses other than the person you have appointed as proxy (and preferably not an immediate relative). Every competent adult has the right to refuse medical treatment, even treatment necessary to sustain life. The refusal of life-sustaining treatment is not considered suicide or assisted suicide. You have a right to appoint a proxy to make decisions for you in the event that you are unable to make decisions for yourself. The appointed proxy must make decisions as you would have made them, or if your wishes are not known, make decisions in your best interest. The one exception is the decisions to withdraw or withhold artificial nutrition (tube feeding) and hydration (intravenous fluids). This decision can not be made without reasonable knowledge of what you would have wanted. If you have not appointed a proxy then, under New York State Law, there is no one who becomes the proxy by default. For example, not the wife for her husband or vice versa, not a parent for an unmarried adult child, not an adult child for a parent. Without a proxy having been named, life-sustaining treatment will be provided unless there is clear and convincing evidence that the person would not have wanted it. In addition to, or instead of, appointing a proxy you have the right to create a living will that spells out what you would or would not want done, in the event that you are unable to make decisions for yourself. However, living wills are less flexible than designating a health care proxy. Checklists The following information should be compiled and made available to the individual or individuals responsible for maintaining your affairs after you are no longer able. In some cases, rather than list the information, you will indicate where the information can be found. Make sure the information is reviewed and updated regularly (perhaps as part of your end of year routine or on your birthday).
Vital Statistics ( * = needed for death certificate ) Obituary Document any information not included above that you want available for your obituary: names of children, close relatives, education, work/career, community activities, honors/prizes, hobbies/avocation, volunteer activities, memorial gifts may be given to IF YOU WANT TO KNOW MORE Advance Directives Use one of these three booklets to help you identify and clarify your wishes related to healthcare at end of life. Five Wishes (booklet) Your Way: A Guide to Help You Stay in Charge (booklet) Caring Conversations Workbook (booklet) Funeral arrangements Many patients and families now pre-plan any memorial service, decide whether to use cremation or burial, and prepay for the services. After the death, the family may feel such pressure to decide things quickly that they can end up spending much more than anyone wanted. The pressure of making arrangements can also hinder the family's grieving process. The New York State Funeral Directors Association (NYSFDA) answers frequently asked questions about arranging and prearranging funerals; cremation/burial options; Medicaid issues; consumer's rights pertaining to funerals and preplanning; death and funeral statistics; casket purchasing; and issues regarding embalming and viewing their deceased. NYSFDA also provides an online searchable listing of their membership to assist when looking for a funeral home in New York State. Contact NYSFDA, 4 Wembley Square, Albany, New York 12205 Phone: 800-291-2629, E-Mail: This e-mail address is being protected from spambots, you need JavaScript enabled to view it The brochure Facts for Consumers/Funerals: A Consumer Guide is available from the Federal Trade Commission, Bureau of Consumer Protection, Office of Consumer & Business Education, Washington, DC 20580, Phone: 202-FTC-HELP Memorial societies offer simple, affordable, dignified funeral alternatives. These societies do area price surveys and may have negotiated a discount for members. They offer a planning booklet ($10) called "Before I Go, You Should Know" which outlines your funeral and final plans. Contact Funeral & Memorial Societies of America Inc, Funeral Consumers Alliance (FAMSA-FCA), PO Box 10, Hinesburg, VT 05461, Phone: 802-482-3437, 800-765-0107, Email: famsa@ funerals.org If you are interested in joining a local funeral planning society, contact Syracuse Memorial Society, PO Box 67, Dewitt, NY 13214, 315-446-0557. Syracuse Memorial Society is a member of FAMSA - FCA. Lifetime membership is $20 and includes "Before I Go, You Should Know." If you are a Veteran, you may be entitled to Veterans benefits for funeral and burial expenses. Call the US Department of Veterans Affairs National Cemetery Administration at 800-827-1000, e-mail them at This e-mail address is being protected from spambots, you need JavaScript enabled to view it or see their Web site for more information. In some cases, Social Security provides a lump-sum payment of $255 toward burial expenses. Call 800-772-1213 or see their Web site for more information. Donation of whole body, organ, tissue, eye After death, under certain circumstances, parts of the body may be donated for transplantation. When death occurs in a hospital, Federal law requires that the family of the deceased be offered the option of donation. Often the election of donation can be the single positive aspect in otherwise tragic circumstances. The consent of the next-of-kin is always required, so discussion of this important end of life issue with your family is essential. Organ donation Tissue donation Even a cancer patient, unable to donate organ or tissue, can sometimes donate the eye or cornea. For more information, contact: Central New York Eye and Tissue Bank (CNYETB) 517 E. Washington St., Syracuse, NY 13202 Phone 315-476-0199
Whole body donation Capturing Memories As you put your affairs in order, a creative and fulfilling endeavor you might consider is giving your family the gift of your memories. Hospice Foundation of America has created a workbook called A Guide to Recalling and Telling Your Life Story to help older people record cherished and priceless memories, values, and the traditions of their heritage. This workbook can be used as a focus of personal exploration and reflection. Cost: $18. Contact: Hospice Foundation of America, 2001 S Street NW #300, Washington, DC 20009, Phone: 800-854-3402, Fax: 202-638-5312. A similar tool is the book Legacy, A Step-By-Step Guide To Writing Personal History, by Linda Spence. This 155 page volume is available in either paperback ($13.37) or hardcover ($24.95) from bookstores or Web bookstores. Websites The International Association for Hospice and Palliative Care (IAHPC) This Web site provides information on hospice and palliative care both in the U.S. and abroad, and contains cross-cultural studies of care practices as well as links to forums and publications. National Hospice and Palliative Care Organization Hospice and Palliative Care Associates of New York State Sharing Your Wishes is a program to help older adults become aware of the importance of planning in advance for their health care in the event that they experience an illness or condition that prevents them from making or communicating decisions. This is the best way to ensure that their choices are known, understood, and honored. If you could not speak for yourself and were unable to make medical decisions, would your loved ones know what your wishes are? If your wishes have been put into writing, would they know where to look for them? Too often, advance directives (documents such as a health care proxy and living will that outline your wishes and designate a decision maker) are nowhere to be found when they are most needed. You can prevent that from happening by filing your advance directives with AssuringYourWishes.org. Growth House Aging With Dignity Dying Well Last Acts Project on Death in America Americans for Better Care of the Dying Partnership for Caring Caring Conversations NYS Partnership for Long Term Care Recycle Medical Devices Medicare Medicaid Reverse Mortgages Estate Planning Books Anderson, Patricia. Affairs In Order, A Complete Resource Guide to Death and Dying. New York: Collier Books, 1991. Byock, Ira, MD. Dying Well: Peace and Possibilities at the End of Life. Riverhead Books, 1997. Morgan, Ernest. Dealing Creatively with Death: A Manual of Death Education and Simple Burial. 12th ed., updated and revised. Edited by Jenifer Morgan. Bayside, NY: Barclay House, 1990. Simpson, Sheila. The Survivor's Guide: Coping With the Details of Death. Toronto: Summerhill Press, 1990. Singh, Kathleen Dowling. The Grace in Dying: How We are Transformed Spiritually as We Die. Harper, 1998. Tobin, Daniel, MD. Peaceful Dying: The Step-by-Step Guide to Preserving Your Dignity, Your Choice, and Your Inner Peace at the End of Life. Perseus Books, 1999. |
