Helpful Resources On Advance Directives And End Of Life Care

For those facing the prospect of providing or needing long-term care, this list of guidelines and organizations offers invaluable information about advance directives and end-of-life treatment. Included in the End-Of-Life Guidelines section are handbooks and factsheets for caregivers as well as tips for paying for and choosing hospice care. Additionally, don’t miss the healthcare societies and caregiver alliances included in the list of Caregiver and Patient Organizations.

Getting Started General End-of-Life Guidelines Caregiver and Patient Organizations

Getting Started

These useful definitions from clarify some commonly used end-of-life terms:

  • Advance Directives “are the legal documents, such as the living will, durable power of attorney and health care proxy, which allow people to convey their decisions about end-of-life care ahead of time. Advance directives provide a way for patients to communicate their wishes to family, friends, and health care professionals and to avoid confusion later on, should they become unable to do so.”
  • Durable Power of Attorney “is the legal document that names a patient’s health care proxy.”
  • A Health Care Proxy is “a person appointed to make a patient’s medical decisions if the patient is unable to do so.”
  • A Living Will “is a set of instructions documenting a person’s wishes about medical care intended to sustain life.”

State-by-State Advance Directives is a directory which includes links to advance directives and instructions for each state. Because each state has different laws regarding end-of-life care, it is very important to check this resource.

General End-of-Life Guidelines :

  • Advance Directives, published by The National Cancer Institute, is a detailed explanatory resource for those thinking about end-of-life care, living wills, and a health care proxy. This document is great for those new to these issues.
  • Caregiver’s Handbook is a lengthy, thorough document with sections on personal care, nutrition, emotional well-being, legal affairs, liability, and caring for the caregiver.
  • Coping with Cancer is a good first-stop resource. This page includes a list of links to managing physical and emotional health, finding healthcare services, financial, insurance, legal information, and survivorship.
  • Eldercare Factsheet offers tutorials about assisted living, government assisted housing, respite care, warning signs, and tips on home modification. Also included is a booklet on staying “in touch” during crisis situations.
  • ElderCare Locator enables family members to find elder care services based on zip code for any location in the United States. This service is made possible by the Department of Health and Human Services.
  • End-of-Life FAQ, published by The National Cancer Institute, answers common end-of-life questions including tips for home caregivers on when to seek professional assistance and what to do when a patient dies.
  • End-of-Life Terms is a glossary of all terminology for those dealing with terminally ill patients. This list includes definitions of Do Not Resuscitate orders, Emergency Medical Services, Life Sustaining Treatment, and Medical Power of Attorney.
  • End-of-Life Wishes is an article from the New York Times which can help to explain how to successfully communicate patient wishes to medical personnel. This article includes personal examples of end-of-life situations gone wrong and how to avoid them.
  • Family Caregiving 101 lists stages of caregiving, how to manage and refer care, and information about public policy. This site is a good first resource for those just beginning to provide care.
  • Getting Your Affairs in Order is sponsored by the U.S. National Institute of Heath’s National Institute on Aging. It explains legal documents, financial records, and the importance of organizing these records before a family member falls ill.
  • HIPPA Privacy explains the rights patients have regarding their medical information, what kinds of information is protected, and who must follow HIPPA laws.
  • Hospital Visitation Authorization offers legal wording for patients to express wishes about who may visit them in a hospital room. This resource is expecially useful for those caring for unmarried partners and close friends.
  • How to Rest in Peace is podcast from NPR’s This American Life which deals with life after the death of a family member. Act two, “The Good Son,” describes the relationship between a son and a mother who is trying to end her life.
  • Living Will FAQ offers answers to questions about advance directives, living wills, and do not resuscitate orders.
  • Long-Term Care Insurance information is provided by Medicare. It details insurance options and limits, accelerated death benefits, life and viatical settlements.
  • Medline Plus Advance Directives is a large directory of journal articles, dictionaries, clinical research, and overviews about living wills and advance directives. This site is a service of the U.S. National Library of Medicine and the U.S. National Institutes of Health.
  • Nursing Homes allows users to find and compare nursing homes in their area and guidelines for how to assess the quality of nursing home staff.
  • Palliative Cancer Care defines palliative care and the difference between it and hospice care, when and how it is used, and payment guidelines.
  • Palliative Education Resource Center provides numerous PDF documents for download for caregivers. Topics include pain assessment, discussing treatment goals, communication, and death pronouncement.
  • Paying for Long-Term Care breaks down average costs in the United States in 2009 for nursing homes, assisted living facilities, and home health aides. The site also explains what Medicare and private Medigap Insurance will cover, and what providers generally pay for on their own.
  • Planning for Long-Term Care, from the National Clearinghouse for Long-Term Care Information, explains the importance of planning and why it is often not done, and personal examples from long-term care providers.
  • Right-to-Know advocates for patient counseling at end-of-life stages. This site explains the legal history of how a right-to-know act was introduced in California legislature in 2008.
  • Signs of Death gives caregivers specifics on how to know if a patient is close to death by describing breathing patterns and sensory and mental changes.
  • The Dying Process is a free guide for caregivers available for download from the Hospice Foundation of America. It addresses physical symptoms of dying and psychological issues which can arise for patients.
  • Types of Advance Care Directives is helpful for those familiar with the basics who want more detailed information on durable power of attorney and terminal illness. This site is sponsored by the American Cancer Society.
  • Understanding Long-Term Care, from the National Clearinghouse for Long-Term Care Information, explains how to perform the Activities of Daily Living, the risks of needing long-term care, and how needs might change over time.

Caregiver and Patient Organizations :

  • AAHSA, the American Association of Homes and Services for the Aging, has 5,700 member organizations and offers links to assisted living, continuing care retirement communities, and other community-based services.
  • AARP, the American Association of Retired Persons, is a site for those over age 50. It includes sections such as relationships, personal growth, home, health, money, and this section on caregiving.
  • ADEAR, the Alzheimer’s Disease Education and Referral Center, provides data on symptoms, diagnosis, and treatment and numerous tips for caregivers.
  • American Health Care Association is dedicated to those giving long-term care. It is a federation of 10,000 non-profit and for-profit assisted living and nursing facilities across the country. This site provides trends and statistics about nursing homes, information about disaster planning and clinical practice.
  • American Society on Aging is the self-proclaimed “largest organization of multidisciplinary professionals in the field of aging.” This site includes links to regional conferences, web seminars, publications such as “Aging Today”, and diversity initiatives.
  • Americans for Better Care of the Dying offers a reading room including online versions of the books “Handbook for Mortals” and “Improving Care for the End of Life.”
  • Benefits Check Up is good for those needing extra help paying for medical care for an elder. This site gives information on Medicare prescription help and the Supplemental Nutrition Assistance Program.
  • Caregiver 911 includes links to tips, conferences, newsletters and magazines for long-term caregivers.
  • Caring Connections offers a free online course for hospice providers, directions on how to create and store an advance directive on Google Health, guides on downloading state-specific advance directives, and other information for those both caring for someone or grieving a loss.
  • Family Caregiving Alliance is a self-described “public voice for caregivers.” They offer tips for new caregivers, self-care for caregivers, a family care navigator which directs users to state-by-state assistance for those providing care.
  • FDA for Seniors gives users data about diabetes and high blood pressure treatments, online cancer fraud, and medication errors.
  • Geriatric Mental Health Foundation supports patients, caregivers, and medical professionals. Find information here about Alzheimer’s and dementia, depression, and alcohol misuse.
  • Home Care Online describes how to choose a home care provider, patient rights, standard billing and payment practices, and what to do if a problem develops.
  • Hospice Foundation of America provides information for caregivers and providers about grief support groups, pain and patient comfort, and advance care planning.
  • National Alliance for Caregiving offers a booklet for download for family caregivers, a link to a podcast for the depressed elderly, and a report on financial conditions for families providing care.
  • National Center for Assisted Living offers information for assisted living providers, residents and families. This site lists current news related to assisted living accreditation information and training tools for those giving care.
  • National Center on Elder Abuse provides links to a help hotline, family resources, and adult protective services. The site also gives statistics on elder abuse and initiatives begun nationwide to stop this phenomenon.
  • National Consumer Law Center for Older Consumers offers guidelines about medical debt, long-term care insurance, bankruptcy and living trusts.
  • National Council on Agingincludes a section on aging at home, and long-term services and supports .
  • National Elder Law Foundation helps users find certified elder law attorneys, gives information on how to become one, and explains how elder law is evolving.
  • NIH Senior Health is a website featuring categories on bones and joints, cancer, heart and lungs, memory and mental health, treatments and therapies. The site is sponsored by the National Institute of Health.
  • Ombudsmen Resource Center provides information for caregivers of patients in nursing, board and care homes. This site enables users to find ombudsmen, sign up for consumer voice updates, and research resident’s rights in nursing homes.
  • Pension Rights Center includes counseling projects, government agencies, and referral services for those in need of help with their pensions.