Plan for Your End of Life Care
Advance Directives: Living Wills and Medical Power of Attorney
Advance directives are a written record of your wishes for your medical care if a situation arises where you are unable to make your preferences known. Many people think these documents are important only at the end of life or in dire situations such as irreversible brain damage or coma, but you can use an advance directive to specify what kinds of treatments you do not want under any circumstances during the course of your lifetime.
An advance directive is any legal document in which you give instructions about your health care that should be followed if you are unable to competently advocate for yourself. A living will is a type of advance directive that usually refers to your wishes about life-sustaining treatments when you are terminally ill. Medical power of attorney, health care power of attorney, or health care proxy are terms that refer to the legal rights you transfer to a person of choosing who will make medical treatment decisions for you if you can't make them yourself.
The laws regarding advance directives vary from state to state. But generally, it's important to put your wishes down in writing, to get legal witnesses for your document and to be as specific as possible in terms of treatment and identifying those who can and cannot speak for you. Also, keep in mind that you can change aspects of your advance directives at any time.
There are several resources available to learn more about advance directives, legal requirements in your state and forms that can guide you in creating the specific document.
The American Bar Association (ABA) Commission on Law and Aging offers several health care decision tools on its Web site, including a consumer's toolkit for advance health care planning and a pamphlet specifically on advance directives that includes a sample form.
http://www.americanbar.org/content/dam/aba/uncategorized/2011/2011_aging_bk_consumer_tool_kit_bk.authcheckdam.pdf
Aging with Dignity is a national nonprofit organized which has promoted, "Five Wishes," a program for consumers which walks you through how to prepare a directive. This can include your treatment preferences, medical power of attorney, how you want to be treated in the hospital apart from your medical treatment and how you might want to be remembered in the event of your death. The form and directions cost $5 and can be ordered online or over the phone. Forms are also available in Spanish.
http://www.agingwithdignity.org/five-wishes.php
888-594-7437 (toll-free)
Caring Connections is a service of the National Hospice and Palliative Care Organization that offers information on advance directives including state-specific directive forms and legal information. You can get this for free through their Web site or by calling their hotline.
http://www.caringinfo.org/
800-658-8898 (toll-free)
U.S. Living Will Registry is a for-profit company that will store your advance directive electronically in a database where your health care providers can access it at any time. Storage costs range from $59 to $99 but is free or available at discounted rates to individuals who register their directive through health care providers that are members of this service. You can call the hotline above or check out the Web site to see if there are any members in your area.
http://www.uslivingwillregistry.com/
800-548-9455 (toll-free)
AARP has an End of Life section of their Web site which contains short articles on living wills, financial power of attorney, hospice care, a resources page of more Web sites, articles and books on these topics.
http://assets.aarp.org/external_sites/caregiving/end/
MedlinePlus offered through the National Library of Medicine/National Institutes of Health has information on advanced directives.
http://www.nlm.nih.gov/medlineplus/advancedirectives.html
WebMD also has information on legal issues and advance directives for caregivers and patients.
http://www.webmd.com/healthy-aging/caregiver-incapacity-legal
http://www.webmd.com/a-to-z-guides/health-care-agents-appointing-one-being-one
American Academy of Family Physicians has an article titled, "Advance Directives and Do Not Resuscitate Orders."
http://familydoctor.org/online/famdocen/home/pat-advocacy/endoflife/003.html
Harvard Health Publications offers a special guide to living wills and health care proxies, available in print or electronically for $15.
http://www.health.harvard.edu/special_health_reports/the-health-care-power-of-attorney-and-living-will
Sharing your end-of-life plans
After you have written your advance directives, you should make several copies of the document. One should be kept in a secure place that your family members are familiar with, such as a household safe. You should give a copy to the person you have asked to have medical power of attorney and his or her backup, if there is someone in that position, and any other members of your family who you think might be called if there is a medical emergency. You should also take copies to the hospital if you will be admitted for treatment so that your physicians are aware of your wishes. You may also want to provide a copy for your primary care physician. It is also equally important to vocalize your wishes with close family members or friends in addition to having them in writing.
Hospice and Palliative Care
Hospice is intended to help patients live the last bit of their lives as pain free as possible and in many cases in the setting of their choice. Support provided to caregivers is also a significant feature of hospice. Care can provided to the patient in a patient's home through visits from a care team that is supervised by a clinician, or provided 24 hours a day in a hospital, nursing home, or private hospice facility. Hospice is not intended to cure disease but rather to improve the quality of life. It is for people that are not expected to live more than six months. However it is sometimes possible to stay in hospice longer, or a person's condition could even improve, and they leave the hospice program.
Hospice Net is a non-profit organization that provides information about finding hospice care and a variety of information and resources on coping with a life-threatening illness.
http://www.hospicenet.org/index.html
The Visiting Nurse Associations of America (VNAA) is a national association that supports, promotes and advocates for community-based, nonprofit home health and hospice providers that care for all individuals regardless of complexity of condition or ability to pay. VNAA provides information about hospice at http://vnaa.org/vnaa/G/?H=HTML/hospice.html
The Home Care/Hospice Agency Locator contains the most comprehensive database of more than 20,000 home care and hospice agencies.
http://www.nahcagencylocator.com/
http://www.HospiceDirectory.org Eldercare Locator, a public service of the U.S. Administration on Aging connecting you to services for older adults and their families.
http://www.eldercare.gov/Eldercare.NET/Public/Index.aspx
The National Cancer Institute has created a fact sheet on hospice with resources and information.
http://www.cancer.gov/cancertopics/factsheet/Support/hospice
The Alzheimer's Association published a free online resource, "Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities." It is a 21-page booklet that offers information about Alzheimer's disease and related dementia, specifically care issues related to late and final stages.
http://www.alzheimers-illinois.org/pti/comfort_care_guide.asp
Palliative care is different from hospice. Palliative care's goal is to manage pain and relieve symptoms in order to improve the quality of life. It is not only for those in late stages of an illness. It is for any person, of any age, at any time in their illness. Care is usually provided by a health team with doctors, nurses and social workers.
Medline Plus offered through the National Library of Medicine/National Institutes of Health has information on palliative care.
http://www.nlm.nih.gov/medlineplus/palliativecare.html
The Center to Advance Palliative Care provides health care resources and information about palliative care.
http://www.getpalliativecare.org/whatis
The American Society of Clinical Oncology (ASCO) has a variety of resources to help patients and their families talk about advanced cancer and identify the best, individualized treatment plan for each patient.
http://www.cancer.net/patient/Coping/Advanced+Cancer+Care+Planning
The Hospice and Palliative Care Nursing Association has a list of Patient/Family Teaching Sheets on Palliative Care. Many documents are in English, Spanish and Mandarin.
http://www.hpna.org/DisplayPage.aspx?Title=Patient/Family%20Teaching%20Sheets
The National Institute of Nursing Research has a brochure titled "Palliative Care:
Improving quality of life when you're seriously ill."
http://www.ninr.nih.gov/NR/rdonlyres/01CC45F1-048B-468A-BD9F-3AB727A381D2/0/NINR_PalliativeCare_Brochure_50s8C.pdf
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