Spotlight on Advance Directives

What’s At Stake
Four out of five Americans say they would choose to spend their final days and months at home, yet an overwhelming majority die in institutions, primarily in hospitals and nursing homes.

Part of the explanation is they did not clearly convey their preferences to health-care providers and loved ones.

Only an estimated third of Americans have advance directives—legal documents such as a living will or a health care proxy in which they lay out the kind of treatment they would wish to receive, or not receive, when they cannot speak for themselves. Even among severely or terminally ill patients, less than half have directives, according to research by the Agency for Healthcare Research and Quality.

Sadly, that becomes a decision by default. Research shows that unless people communicate their goals for medical care—or unless there is rare agreement among family members and providers—doctors typically provide the full treatment panoply, including aggressive life-saving measures that can make the process of dying unnecessarily prolonged, painful and expensive. As a result, as many as 100,000 persons every year are kept alive in severely brain-damaged or permanently vegetative states – many, against their wishes.

The Background
The idea of advance directives, sometimes called living wills, took hold in the 1980s as a result of the controversy surrounding the case of Nancy Beth Cruzan, a young Missouri woman who suffered injuries in a car accident in January, 1983, and who was kept alive in an irreversible vegetative state for almost eight years.

In 1987, Cruzan’s parents went to court to order the hospital to remove the feeding tube that was keeping their daughter alive, spurring national debate about how and when families can decide to withdraw nourishment or medical treatment to allow a loved one to die.

After a Missouri trial court backed the Cruzans, the state’s attorney general, acting on behalf of the hospital, appealed to the U.S. Supreme Court. In 1990, the court recognized a constitutional right to forgo life-sustaining treatment when it is clear the patient would have wanted to do so. The feeding tube was removed, and Cruzan died, surrounded by her family.

Spurred by that controversy, then- Sen. John Danforth, R-Missouri, who is also an Episcopal priest, introduced the Patient Self Determination Act, which requires hospitals and medical settings which receive Medicaid or Medicare to give patients written information about advance directives, inform them of their right to refuse medical treatment and assist them in writing a directive if they request it.

The purpose of the law, which was signed by then-President George H.W. Bush and took effect in late 1991, was to restore control to the patient, assuring a match between their preferences and the medical treatment they received.

“When facing serious illness, people want to know that their goals, values and hopes will be the primary considerations when difficult decisions have to be made and they cannot speak for themselves,” says Diane E. Meier, a geriatrician and director of the Center to Advance Palliative Care. “A considerable body of research supports this. They actually want to talk about their wishes, and the pros and cons of treatment options with their doctors.”

Meier says that patients are often reluctant to raise these issues because they worry about taking too much of their doctors’ time and because the conversations may be difficult. Providers, for their part, face intense time pressure, and operate in a system in which such conversations are not reimbursed or rewarded.

But she says the discussions are integral to good care—and not just ‘end of life’ care.

“In fact, they are quality-of-life conversations that should occur early in the doctor-patient relationship,” she says. “They allow physicians to explore their patients’ values and goals, and help when they face a serious chronic illness—many of whom will live with the illness for years—to remain in control of their lives.”

The Debate
Nearly two decades after the enactment of the Patient Self-Determination Act, advance directives are well-established in state, as well as federal law. What isn’t well-established, however, is the best process to facilitate an individual’s decision-making and to ensure that their wishes are translated into their treatment.

To this day, only a minority of people prepare directives—presumably because of a reluctance to talk to their loved ones about death, or perhaps because their providers haven’t raised the issue with them. And three in five of those who do prepare them do not share them with their providers.

“What good does it do, if it’s filed away in the lawyer’s office?” asked John Rother, senior policy and strategy adviser for AARP. “The conversation with the doctor turns out to be the key missing link.”

The provider’s role is central, especially for those patients diagnosed with serious illness - laying out medical options and their risks and benefits, including hospice, the availability of pain medications to alleviate suffering and identifying the person entrusted to make medical decisions if the patient is no longer able to make their own.

To encourage these conversations, Section 1233 of America’s Affordable Health Choices Act, endorsed by three committees in the House of Representatives, contains a provision permitting Medicare to pay doctors, nurse practitioners or physician assistants for a voluntary “advance care planning consultation.” The bill establishes such consultations as a Medicare-covered service every five years.

The American Medical Association says involving one’s doctor in advance-care planning is common sense, and supports measures to reimburse them for the time they should spend talking to patients about their options.

Besides the AMA, supporters of the provision include the American Academy of Hospice and Palliative Medicine, the American College of Physicians, American Hospice Foundation, Center to Advance Palliative Care, Consumers Union, Gundersen Lutheran Health System, National Hospice and Palliative Care Organization, Hospice and Palliative Nursing Association, Medicare Rights Center, Providence Health and Services and Supportive Care Coalition.

“The debate isn’t about advance directives,” AARP’s Rother says of the legislative issue. “They’ve been in the law a long time. The debate is about whether doctors should be paid by Medicare for having discussions about them with their patients. Which relates back to the point that unless you talk about your preferences with your doctor, he or she is unlikely to know what they are if questions comes up and you’re unable to speak for yourself.”

Nonetheless, the provision ignited a firestorm of controversy after conservative critics suggested it would lead to government-backed “death panels” that would ration care to older people and those with disabilities.

That is a falsehood. In fact, there is no language calling for any sort of government involvement beyond that of reimbursing doctors for their time. The bill also explicitly prohibits insurers from promoting “suicide, assisted suicide or the active hastening of death.”

Some critics also say they want language added to protect seniors from being pressured into signing away their rights to medical treatment in a moment of despair or depression.

“I’m not aware of ‘death panels’ in the bill,” David O’Steen, executive director of the National Right to Life Committee told the Associated Press. “I’m not aware of anything that says you will be hauled before a government bureaucrat. But we are concerned … it doesn’t take a lot to push a vulnerable person—perhaps unwittingly—to give up their right to life-sustaining treatment.”

Where Things Stand in Washington
Currently the House tri-committee bill is the only health reform legislation that contains provisions to reimburse health providers for discussions of treatment choices in advance of any sort of crisis.
After the issue became controversial, the Senate Finance Committee did not incorporate such language.

Senator Charles E. Grassley of Iowa said in a statement that the Finance Committee “dropped end-of-life provisions from consideration entirely because of the way they could be misinterpreted and implemented incorrectly.”

It is unclear what, if any, of the House language might survive the House-Senate Conference Committee, when different versions of the bills are merged.

Regardless of what happens in the pending legislation, Meier says advance directives are “an important part of good medical care today, and will be an important part of good medical care in the future.”

Advance Directives Reading List

1. Caring Connections
   Free resources and information to help people make decisions about end-of-life care and services before a crisis. National Hospice and Palliative Care Organization.
2. Five Wishes
   Five Wishes was introduced in 1997 as a way to promote conversations with family members and doctors that seeks to safeguard the rights of the sick, aging or dying. Aging with Dignity, 1997.
3. End-of-Life and Palliative Care
   A collection of research on end-of-life and palliative care. Robert Wood Johnson Foundation.
4. 'Death panels?' What really happens in end-of-life discussions?
   Diane E. Meier, a geriatrician at Mount Sinai Medical Center in New York and director of the Center to Advance Palliative Care, explains how advance-care planning empowers patients. The Insiders Guide to the Health Reform Galaxy, Aug. 14, 2009.
5. How Much Does It Hurt?
   A look at how untreated or inadequately treated pain is among the greatest medical problems. Robert Wood Johnson Foundation, Dec. 31, 2004.
6. CPR: It's Not Quite Like 'ER'
   A look at cardiopulmonary resuscitation (CPR), which refers to a group of procedures that may include artificial respiration and intubation to support or restore breathing, chest compressions or the use of electrical stimulation, or medication to support or restore heart function. Robert Wood Johnson Foundation. Dec. 31, 2004.
7. When Patients Cannot Eat or Drink
   A look at the issues surrounding artificial nutrition and hydration. Robert Wood Johnson Foundation. Dec. 31, 2004.
8. Means to a Better End: A Report on Dying in America Today
   The report rates each of the 50 states and the District of Columbia on the quality and availability of appropriate end-of-life care. Robert Wood Johnson Foundation, Nov. 8, 1992.
9. The Role of Federal Government in Health Care
   Brief from Health Affairs/ RWJF Health Policy series explores the debate over advance-care planning, controlling Medicare spending and the government’s role in health care. Robert Wood Johnson Foundation, Aug. 24, 2009.
10. Facing Up to the Inevitable, in Search of a Good Death
    Jane Brody on making the process of death more humane for the patient and his loved ones. New York Times, Dec. 30, 2003.
11. Advance Care Planning: Preferences for Care at the End of Life
    A synthesis of research on advance care planning. Agency for Healthcare Research and Quality, March 2003.
12. Are Regional Variations in End-of-Life Care Intensity Explained by Patient Preferences?
    A survey of 2,515 Medicare beneficiaries found they generally preferred treatment focused on palliation, rather than life-extension. Amber Barnato et. al. Medical Care. May, 2007.
13. Life-Sustaining Technologies and the Elderly
    U.S. Congress, Office of Technology Assessment, July, 1987.
14. Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support
    Council on Scientific Affairs and Council on Ethical and Judicial Affairs. JAMA. 263 (3):426-30. Jan. 19, 1990.
15. The Law of Advance Directives
    Karen Markus writes about legal documents to ease end-of-life decisions. Markkula Center for Applied Ethics. Winter, 1997.
16. FACT CHECK: No 'Death Panel' in Health Care Bill
    The Associated Press separates fact from fiction about the advance directive provision of the Affordable Health Choices Act. Associated Press, Aug. 11, 2009.
17. Practice Parameters: Assessment and Management of Patients in the Persistent Vegetative State
    Report of the Quality Standards Subcommittee of the American Academy of Neurology, 1995.
18. Nancy Cruzan Dies, Outlived by a Debate Over the Right to Die
    Tamar Lewin writes how Cruzan’s case became the centerpiece of a bitter debate about how and when families can decide to withdraw nourishment or medical treatment to bring about the death of an incapacitated loved one. New York Times, Dec. 27, 1990.
19. The Patient Self-Determination Act
    A look at the law and what it means for patients. American Bar Association.