Making Plans for Your End-of-Life Health Care

Though it may be uncomfortable to think about, putting your wishes about your end-of-life care in writing—with documents known as advance directives—can make a big difference. For example:

  • A severe accident or injury, or an acute condition like stroke, may require immediate, unexpected decisions about life-support treatment, feeding tubes and organ donation.
  • When disability or severe chronic disease —such as Alzheimer's disease or amyotrophic lateral sclerosis (ALS) — is expected to keep getting worse until death, the patient, family members or friends will need to make decisions about end-of-life care.
  • In advanced stages of cancer or even in the natural course of aging, end-of-life care might involve choices about pain relief and nursing or hospice care.

More than two-thirds of today’s 65-year-olds will require long-term care assistance (see Long Term Care) at home or in a facility, according to 2005 data from researchers at Penn State and Georgetown Universities.

Despite that reality, many people don’t make provisions for end-of-life care. A small survey of 900 adults over age 25 found that only 30 percent of those surveyed named a health proxy (or agent) and only 46 percent had a living will.

Advanced Directives Can Help You and Your Loved Ones

Having an advanced directive increases the likelihood that you'll receive the care you want and may give your loved ones comfort and guidance at a time they may desperately need it.

Two types of advance directives are living wills and durable power of attorney for health care, sometimes called medical power of attorneyhealth care agent or health care proxy.

  • Living will – In a living will, you can note what type of medical care you’d want if you were in a coma, whether you’d want life-support treatment if you had permanent and severe brain damage, and circumstances under which you do not want to be kept alive. Living wills can be very specific. You can say whether you want or do not want breathing assistance, artificial hydration or feeding, CPR or blood transfusions, or even certain medications.
  • Durable power of attorney for health care -You name a person—generally a spouse, family member, or close friend—to make medical decisions for you if you’re unable. For example, this person might work with health care professionals to decide if you need medicine or surgery, consent to your transfer to a nursing home or hospice facility, or donate your organs or tissues after death.

Online Resources for Advance Directives

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.

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 or call 888-594-7437.

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 at 1-800-658-8898.

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 800-548-9455 or check out the Web site to see if there are any members in your area.

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 resource page of more Web sites, articles and books on these topics.

MedlinePlus, offered through the National Library of Medicine/National Institutes of Health, provides information on advanced directives.

WebMD also has information on legal issues and advance directives for caregivers and patients.

American Academy of Family Physicians has an article titled, "Advance Directives and Do Not Resuscitate Orders."

Harvard Health Publications offers a special guide to living wills and health care proxies, available in print or electronically for $18.

Mayo Clinic has general information on living wills and advance directives with answers to common questions about the process.

How Do You Create an Advance Directive?

  1. Decide what you want- “Engage With Grace” offers five questions designed to help you think about your wishes and discuss them with a loved one.
  2. Get state-specific information and forms--“Caring Connections,” a free program of the National Hospice and Palliative Care Organization aims to improve end-of-life care. Download your state’s advance directives.

“Five Wishes,” sponsored by Aging with Dignity, also offers state-specific guidance on preparing an advance directive. Keep in mind that four states require notarization of advance directives: Missouri, South Carolina, North Carolina, and West Virginia.

  1.  Pencil it in & complete the form-The National Healthcare Decision Day website has a variety of forms to help you get started.
  2.  Distribute and talk about it- Don’t make the mistake of just shoving it in a drawer or safe deposit box. Provide copies of your advance directive to your appointed health care agent, other family members, your family doctor, any specialist health care providers you work with and your hospital, if you’ll be undergoing a procedure. Tell the person you’ve named as your health care agent that you’ve appointed them to make decisions, and keep their emergency contact information updated in any personnel records at work, insurance documents and with your physicians.
  3. Review periodically-Review your advance directive every three to five years, at the point of a new diagnosis, during progression of a serious illness or if you change doctors. Your perspective on your end-of-life care and who you would like to represent your wishes can change over time.

Resources reviewed June 2013

MORE PLAN FOR YOUR END-OF-LIFE CARE RESOURCES
What Is Palliative Care?
Learn more about palliative care, which can help ease the effects of treatments or serious illnesses, and find out more with resources for locating palliative care services.
Long-Term Care and Long-Term Care Insurance
Resources to help you learn about long-term care, which provides assistance with daily needs in case of disability or illness, and information on long-term care insurance.
Choosing a Nursing Home
Selecting a nursing home for a family member can be a challenging process. Here are some private and governmental resources to help you compare homes and learn about their services.
Making Plans for Your End-of-Life Health Care
Advice for having conversations about your end-of-life care and tips and online resources for creating an advance directive.
What Is Hospice?
Hospice care can provide extra support for people near the end-of-life and their families. Here’s advice on how to find hospice care, including online directories and advice for paying for this valuable service.
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