Navigating the Health Care System

Advice Columns from Dr. Carolyn Clancy

AHRQ Director Carolyn Clancy, M.D., has prepared brief, easy-to-understand advice columns for consumers to help navigate the health care system. They will address important issues such as how to recognize high-quality health care, how to be an informed health care consumer, and how to choose a hospital, doctor, and health plan. Check back regularly for new columns.

It's natural to avoid thinking—never mind talking—about dying. As a result, most people do not make their wishes clear to their loved ones or their health care providers. This includes many people who are nearing the end of life.

One way to communicate your wishes about future health care decisions is through "advance directives," which are legal documents that allow you to convey your decisions about your health care, especially end-of-life care. But fewer than half of severely or terminally ill patients have advance directives in their medical records, according to research sponsored by my agency, the Agency for Healthcare Research and Quality (AHRQ).

Even before you become old or ill, you need to think and talk about the kind of care you would want should a stroke, terminal illness, or life-threatening event occur. Ideally, these discussions should take place long before you need care. If such conversations don't take place, your family and physician must make decisions based on what they think you would want. As a physician, I know making decisions on behalf of a loved one is particularly difficult during an already stressful time.

End-of-life planning involves some thought and effort, such as completing advance directives. In addition to talking about your wishes with your family members, you should also talk with your doctor. Most doctors welcome the chance to discuss such issues but may be hesitant to raise the topic.

We need more doctor-patient discussion in this area. As many as three-quarters of physicians whose patients had advance directives were unaware that those documents existed, according to research. And only 12 percent of patients with advance directives had received input from their doctor.

Discussing these matters increases the likelihood of getting your wishes met. Patients who are dying and family members who survive them say that lack of communication with doctors causes confusion about medical treatments, conditions, and choices that need to be made.

AHRQ-funded studies show that conversations with doctors about advance care planning led to increased satisfaction among patients age 65 years and older. Patients who talked with their families or physicians about their preferences for end-of-life care:

  • Had less fear and anxiety.
  • Felt they had more ability to influence and direct their medical care.
  • Believed that their physicians had a better understanding of their wishes.
  • Indicated a greater understanding and comfort level than they had before the discussion.

Depending on your age and medical condition, your doctor may be helpful in starting your decisionmaking. But you can also rely on several good resources to help you, which are listed at the end of this column. Once you've considered your options and had discussions, you need to put your desires in writing in proper documents. Be sure to give copies to your family members and your doctor.

There are some differences in advance directives based on the State where you reside. Be sure to check with your doctor or a person familiar with these issues as they apply to your State.

Types of advance directives worth considering include:

  • A living will, which is a formal legal document, authorized by State laws, that describes the kinds of medical treatments you want or do not want if you become incapacitated. It can be as specific or general as you wish.
  • A durable power of attorney, also known as a health care proxy, which is a document that lets you designate a person to make treatment decisions for you if you cannot make those decisions. You'll want to alert your proxy that you have given him or her this responsibility and talk about your wishes.
  • A Do-Not-Resuscitate (DNR) order, which is a document that directs what measures should or should not be taken on your behalf in events such as cardiac or respiratory arrest. Typically, a DNR order is directed to emergency medical services or other first responders.

Talking about our concerns and taking steps to address them remains solid advice throughout life, even as we anticipate its end. I'm Dr. Carolyn Clancy and that's my advice on how to navigate the health care system.

More Information

Agency for Healthcare Research and Quality
Advance Care Planning: Preferences for Care at the End of Life
http://www.ahrq.gov/research/endliferia/endria.htm

American Bar Association's Commission on Law & Aging
Consumer's Tool Kit for Health Care Advance Planning
http://www.abanet.org/aging/toolkit/

Aging with Dignity
Five Wishes
http://www.agingwithdignity.org/five-wishes.php 

National Hospice and Palliative Care Organization
Caring Connections
http://www.caringinfo.org/

AARP
Advance Directives: Planning for the Future
http://assets.aarp.org/external_sites/caregiving/multimedia/EG_AdvanceDirectives.html

AARP
Talking About Your Final Wishes
http://www.aarp.org/families/end_life/a2003-12-02-endoflife-finalwishes.html?print

National Long Term Care Ombudsman Resource Center
Helpful contacts
http://www.ltcombudsman.org/static_pages/ombudsmen.cfm

Current as of July 2009
Internet Citation: Talking About End-of-life Treatment Decisions. July 2009. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/columns/navigating-the-health-care-system/070709.html