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.

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:

Health Care Proxy
Hospice of Central New York
990 Seventh North Street
Liverpool, NY 13088-6148

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 . 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).

What Every Adult Should Know about New York State Law

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.

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).

• Full Legal Name*
• Address*
• Phone
• Date of birth*
• Place of birth*
• Citizenship*
• Marital status*
• Full legal name of spouse or partner, address
• Full legal name of children, date of birth, Social Security Number
• Name and address of "ex"
• Father's legal name and birthplace*
• Mother's maiden name and birthplace*
• Social Security* and medicare numbers
• Military History, including rank and branch of service, dates, military serial number, affiliations and papers (including discharge papers)*
• Legal information Last Will and Testament - location, executor
• Durable Power of Attorney for Financial Matters - location, identify individual
• Birth certificate
• Marriage certificate
• Divorce decree, separation agreement
• Other Medical Information Information/authorization related to donation of whole body, organ, tissue, eye
• Medical device recycling information: pacemaker, glasses, hearing aid, walking aids, commode, etc.
• List of medications, allergies, blood type and medical conditions that family should be aware of
• Financial information Titles/deeds/leases to all property, including home, automobile, RV/boat, other real estate
• Safe Deposit box: bank, key, who has access, contents
• Bank accounts, including account numbers, types of account and the location of banks; who has access, where are statements
• Securities and investments: stock certificates, bonds, brokerage statements
• Trusts
• IRAs
• Retirement benefits/pensions
• Social security benefits
• Veterans benefits
• Deferred annuities
• Insurance policies, including insurance company name, policy number, beneficiary as stated on the policies and type of insurance (health, life, long term care, property, employee/business, union, etc).
• Loans receivable, name and address of borrower as well as terms of loan
• Loan/lien payable information, who holds them and if there are any death provisions: includes mortgage,home equity loan and credit cards
• Tax returns for past six years and name of accountant or tax preparer
• Pre-paid funeral arrangements, burial plot, any information related to your preferences Instructions for funeral services and burial (if arrangements have been secured, name and location of funeral home).
• Guarantees and warranties for appliances and equipment
• Contacts (name, address, phone) relatives (list)
• Friends (list)
• Attorney
• Physician(s), dentist, optometrist, therapist
• Clergy
• Insurance agent, financial planner, tax preparer
• Hairdresser/barber (in case of appointments)
• Plumber
• Heating fuel company, electric company
• Yard and garden helper
• Veterinarian
• Volunteer commitments
• Social clubs
• Hospitals admitted to in past year
• Home care providers

Vital Statistics ( * = needed for death certificate )

IF YOU WANT TO KNOW MORE

Five Wishes (booklet)

Eight page simplified advance directive form that is valid in 35 states, including New York. Five Wishes addresses not only the patient's physical needs, but also his/her medical, personal, emotional and spiritual needs as well. Available in English and Spanish from Aging with Dignity, PO Box 1661, Tallahassee, FL 32302-1661, Phone: 850-681-2010.

Your Way: A Guide to Help You Stay in Charge (booklet)

Sixteen page workbook that helps you to clarify your feelings and views regarding what is important to you and what isn't. A valuable tool for documenting this information and communicating it to your decision-makers. Two free copies of the guide can be requested by phone or email from Healthcare and Elder Law Programs Corp (HELP), 1404 Cravens Ave, Torrance, CA 90501, Phone: 310-533-1996, Email: This e-mail address is being protected from spambots, you need JavaScript enabled to view it .

Caring Conversations Workbook (booklet)

Caring Conversations is a consumer education initiative that helps individuals and their families share meaningful conversation while making practical preparations for end-of-life decisions. The 16 page Caring Conversations Workbook can be viewed (not printed) online in .pdf format or ordered online, by fax or by phone for $5 plus postage. Contact: Midwest Bioethics Center, 1021-1025 Jefferson Street, Kansas City, MO 64105, Phone: 800-344-3829, Fax: 816-221-2002.

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.

Organ donation

When brain death occurs and the deceased is maintained on a respirator, it may be possible to donate heart, kidney, lung, liver, pancreas. For more information contact Finger Lakes Donor Recovery Network, 1732 W Genesee St, Syracuse, NY 13204, Phone: 315-488-5571

Tissue donation

In many cases, when organ donation is not possible, the deceased may still donate tissue such as bone, skin, heart valves or connective tissue. For more information contact American Red Cross Tissue Services, 636 S Warren St, Syracuse, NY 13202, Phone: 800-836-6677.

Eye and cornea donation

Even a cancer patient, unable to donate organ or tissue, can sometimes donate the eye or cornea. For more information, contact Central NY Eye Bank & Research Corp, 475 Irving Ave, Syracuse, NY 13210, Phone: 315-471-6060.

Whole body donation

Whole body donation plays a significant role in research and education. If desired, the cremated remains can be returned to the family of the deceased. For more information contact Upstate Medical University, Dept of Anatomy & Cell Biology, 766 Irving Ave, Syracuse, NY 13210, Phone: 315-464-5120.

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.

National Hospice and Palliative Care Organization

The National Hospice and Palliative Care Organization is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end of life care and expanding access to hospice care. The site contains a database of local hospice and palliative care programs and other useful information.

Hospice and Palliative Care Associates of New York State

This Website identifies hospices throughout the state and gives other information pertinent to hospice care in New York State.

Growth House

Growth House is a San Francisco-based non-profit organization that offers a broad range of online information on end-of-life care from hospice handbooks to sites that give tips on explaining death to children. The Web site also includes an Inter-Institutional Collaborating Network (IICN) that joins major end-of-life care organizations from the United States, Canada, the United Kingdom, and Spain in an online community.

Aging With Dignity

This website contains "Five Wishes," a document that helps individuals express their final wishes and, unlike other living wills and advanced directives, sees to all of a person's needs: medical, personal, emotional, and spiritual.

Dying Well

The Dying Well Web site, created by Dr. Ira Byock, past president of the American Academy of Hospice and Palliative Medicine, contains a wide range of resources on death and life-threatening illness, plus articles by Dr. Byock and information on his books.

Last Acts

Last Acts is a call-to-action campaign dedicated to improving end-of-life care through the sharing of ideas and solutions by professional care givers, institutions and individuals. Part of a national campaign by the Robert Wood Johnson Foundation to improve end-of-life care, Last Acts offers an extensive resource directory, information on palliative care, daily journal articles, guides to coping with grief and bereavement, news, an electronic newsletter, and campaign updates.

Project on Death in America

Project on Death in America is a project designed to explore and fundamentally change the perception of dying and death through research, education and policy. Project on Death in America, Open Society Institute, 400 W 59th St, NY, NY 10019, Phone: 212-548-0150, Fax: 212-548-4613, Email: This e-mail address is being protected from spambots, you need JavaScript enabled to view it .

Americans for Better Care of the Dying

Partnership for Caring

Partnership for Caring is an advocacy organization for end-of life care. Their Web site provides information on advance directives, pending legislation, and a range of publications and services to foster communication about end-of-life decisions. The nonprofit organization counsels patients and families, trains professionals, and advocates for improved laws. Partnership for Caring Inc., National Office, 1035 30th St NW, Washington, DC 20007-3823, Phone: 800-989-9455, Fax: 202-338-0242, Email: This e-mail address is being protected from spambots, you need JavaScript enabled to view it

Caring Conversations

Caring Conversations is a consumer education initiative that helps individuals and their families share meaningful conversation while making practical preparations for end-of-life decisions. Contact: Midwest Bioethics Center, 1021-1025 Jefferson Street, Kansas City, MO 64105, Phone: 816-221-1100 ext 210, Fax: 816-221-2002, Email: This e-mail address is being protected from spambots, you need JavaScript enabled to view it

NYS Partnership for Long Term Care

This Partnership is an innovative program that combines private long-term care insurance and Medicaid to help New Yorkers prepare financially for the possibility of needing nursing home or home care.

Recycle Medical Devices

Medicare

General information resource center for the Medicare program. The Medicare Rights Center (MRC) provides free counseling services to Medicare beneficiaries who cannot afford private assistance for Medicare-related issues.

Medicaid

Search Medicaid for explanations of their payment policies for consumers and healthcare professionals.

Reverse Mortgages

The Web site for the National Reverse Mortgage Lenders Association (NRMLA), a national non-profit trade association for companies that originate, service, and invest in reverse mortgages-- a frequent financing option for end-of-life care. Also contains general information on estate planning.

Estate Planning

Useful information on Probate, Avoiding Probate, Assets to Spouses, Small Estates, Wills, Trusts

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.