End-of-life care documentation helps in emergency treatment decisions

When Heather Rubesch was a teenager, her aunt died in need of a kidney transplant. In later family discussions, Heather's mother, Linda, expressed some of her views about end-of-life care—for instance, her belief in organ donation.

Those conversations are worth having. Moreover, putting your wishes about 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 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.

Yet, most people don't make provisions for end-of-life care.

"It is only human nature not to want to anticipate or plan in advance for distressing circumstances. Appointing an agent means acknowledging that some time or another we are going to get sick, may lose the ability to communicate, may die," said Diane E. Meier, M.D, director of the Center to Advance Palliative Care in New York City.

Others may be reluctant to use advance health care planning because they fear losing control of health care decision making. Some may be fearful that defining their end-of-life wishes means they won't receive medical treatment at all.

In fact, 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.

Advance Directives: What Are They?

The first place you might hear about advance directives—and be asked if you have one—is at the hospital, a nursing home or a home health care facility.

In 1990, Congress passed the Patient Self-Determination Act. As a result, all facilities that receive Medicare and Medicaid funding are required to ask whether patients have an advance care directive and offer written information about advance directives and patient medical decision-making rights in their state.

An advance directive is a term for several documents that state your choices about health care if you're unable to speak for yourself. Two types of advance directives are living wills and durable power of attorney for health care, sometimes called medical power of attorney, health care agent or health care proxy.

With 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.

With a 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.

"Appointing people to make medical decisions if you are unable to is by far the most important aspect of advance care planning," Meier said. "This person that you appoint doesn't have to be a family member. It does need to be someone who you trust."

In some states, an advance directive offers same-sex couples the opportunity to designate their partners to make medical decisions for them as part of the durable power of attorney for health care.

"This is a way of caring for and supporting your family when they may be left to make critical decisions about your medical treatments," said Ira Byock, M.D., director of palliative medicine at Dartmouth-Hitchcock Medical Center.

So, Who Needs an Advance Directive?

"For anybody that has a serious or chronic illness—heart failure, chronic obstructive pulmonary disorder, chronic lung disease, any cancer, really any serious or life-limiting illness—it's very important to articulate what you don't want or want," said Cari Levy, M.D., a board-certified internist, geriatrician and health services researcher.

Byock recommends that anyone over age 18 prepare these important medical documents. For people under 18, parents or guardians are expected to direct medical care.

In a 2009 survey of physicians, 90 percent said they considered the wishes in a living will when making health care recommendations to the patient's family.

At age 55, Linda Rubesch developed a blood clot that caused a fatal aneurysm. Unknown to her daughter Heather, she had created an advance directive a year earlier as part of the hospital preadmission process for a minor ankle surgery. At that time, she named Heather as her health care decision maker, but didn't tell a single family member, including Heather.

Fortunately, the hospital where Linda had ankle surgery had maintained the hospital file containing that advance directive and used it to contact Heather a year later.

The take-home message is anyone who appoints a medical decision-maker needs to make sure someone knows about it, Meier said.

"I'm still confident in the decisions that I made," Heather said. "Because of [my mother's] directive and the fact that she had spoken with me about her personal wishes prior to her aneurysm, she was able to be an organ donor for nine people, plus countless others through tissue that was used for research." This was exactly what she wanted, Heather said.

Center for Advancing Health

Putting It in Writing

Although a lawyer can help you prepare advance directives, you might be surprised to learn that having an attorney isn't always necessary. Here are some resources to help you:

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: http://www.engagewithgrace.org/Questions.aspx.

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 at: http://www.caringinfo.org/PlanningAhead/AdvanceDirectives/Stateaddownload.htm.

"Five Wishes," sponsored by Aging with Dignity, also offers state-specific guidance on preparing an advance directive: http://www.agingwithdignity.org/forms/5wishes.pdf.

Keep in mind that four states require notarization of advance directives: Missouri, South Carolina, North Carolina, and West Virginia.

3) Pencil it in and complete the forms.

Linda Emanuel, M.D., director of the Buehler Center on Aging, Health & Society at Northwestern's Feinberg School of Medicine, recommends completing your advance directive worksheet in pencil first, while having a discussion of your wishes that includes family members and health care team members. Try the worksheets available (for $15) at http://medicaldirective.org.

4) Distribute and talk about it.

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.

5) Review periodically.

Meier recommends reviewing 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.