What doctors need to know: Schiavo case spotlights advance directives

Physicians need to be proactive in talking to patients.

By Andis Robeznieks — Posted April 11, 2005

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If physicians haven't already been peppered with an increasing number of questions about advance care directives and living wills, they can expect to field many more soon.

There's a new interest in the topic since Terri Schiavo, a Florida woman with severe brain damage who didn't have a written directive or living will, has been at the center of recent moral and political questions surrounding her husband's decision to remove her feeding tube despite her parents' objections in court.

Organizations that help prepare advance directives say the Schiavo case, which drew action from Florida Gov. Jeb Bush, President Bush and Congress, has helped drive record levels of telephone calls to their offices and traffic to their Web sites. Experts say that doctors should expect more questions on the topic, including questions from young patients, because Schiavo was in her 20s when she became incapacitated.

If patients aren't initiating the conversation, experts also advise that physicians should be the ones to bring up the topic of living wills that guide medical care and advance directives that include instruction on medical and personal matters and name a health care proxy.

"If any good comes from a contentious case like this it is that it brings up the subject of advance directives in patients' minds and makes it more likely that patients and physicians will have a successful discussion about what directives will be created and followed," said Michael S. Goldrich, MD, chair of the American Medical Association Council on Ethical and Judicial Affairs. "The goal is to avoid conflict by making patient wishes well known or, in the absence of that, to develop a mechanism to mimic the intent of the patient through their surrogates."

Dr. Goldrich said initiating the conversation may feel awkward to some physicians. Community resources -- such as local and state medical societies and bar associations -- can provide information to make the discussion easier, he added.

"The best way to broach the subject is to say, 'I talk about this with all my patients,' " said Arthur R. Derse, MD, president of the American Society of Bioethics and Humanities and senior consultant for academic affairs at the AMA Institute for Ethics.

Oncologist J. Russell Hoverman, MD, PhD, who serves on ethics panels for a hospice and hospital in Austin, Texas, suggested that primary care physicians can use their intake surveys to raise the question with new patients. For example, print "Do you have a living will? If not, would you like one?" on the questionnaire.

Framing the conversation

Dr. Derse, an attorney and associate clinical professor of bioethics and emergency medicine at the Medical College of Wisconsin, said primary care physicians should start the discussion with every adult patient and shouldn't wait for an illness or condition to trigger the conversation.

"There's a misconception that living wills are for the sick or elderly," he said. "But they're for everybody."

Dr. Derse said this point is not only hammered home by Schiavo's situation, but also by two previous well-known cases involving young women of a similar age and in a similar circumstance: Karen Quinlan in 1976 and Nancy Cruzan in 1990.

The New Jersey Supreme Court ruled that Quinlan could be taken off of a ventilator. In Cruzan's case, rulings from the U.S. Supreme Court and a Missouri court allowed a feeding tube to be removed.

Dr. Hoverman said it's important to approach a patient with a mindset toward quality of life and not focus so much on the patient's death.

"We are trying to prolong life, but one of the things we're also trying to do is let our patients live the best life they can," he said. For patients with chronic conditions, Dr. Hoverman said advance directives have to be customized to acknowledge "decision points." For example, when chemotherapy no longer holds promise for a cure, patients should be asked about comfort care.

"Never say, 'There's nothing more we can do,' because there's always something we can do," he said. "Doctors have to identify other needs besides tumor size; these include family needs, finances, even funeral needs."

Doctors often don't feel comfortable talking about this subject because they don't think they have received enough training in this area and because there is a mindset that talking about a patient's death represents a failure, Dr. Hoverman said.

But if a physician does not feel up to discussing spiritual needs, he or she should be able to refer patients to someone who can, he said.

While patients are increasingly requesting end-of-life care documents, experts say follow-up conversations with family and physicians should be part of the process.

"The important thing is to talk to patients, document their choices and make sure their choices are followed," said Bernard "Bud" Hammes, PhD, who directs the Respecting Choices program at Gundersen Lutheran Medical Foundation in La Crosse, Wis.

Most patients have given the subject some thought, Dr. Hammes said, but many will need help in making their decisions more precise.

"Most say, 'If I'm a vegetable, let me go,' and they have a specific idea what that means, but it's not particularly clear and it's subject to interpretation," he said. "So physicians should say, 'Tell me what that means.' In clinical terms, it could mean that they don't know who they are, where they are or who they're with."

Ensuring wishes are followed

When a directive is finished, Dr. Hammes said a copy should go in the patient's medical record and another to the community hospital they are most likely to use. In La Crosse, if patients are transferred to another hospital or to a nursing home, their advance directives are automatically copied and sent with them.

Numerous medical societies, including the California Medical Assn. and the Florida Medical Assn., have reported surges in the number of people visiting pages on their Web sites that deal with end-of-life care.

The Tallahassee, Fla.-based Aging With Dignity reports that it usually ships about 100 copies daily of its "Five Wishes" document that includes information on living wills, appointing a health care proxy or surrogate and other tips. At the end of March, the organization was seeing 30 to 40 times that number of requests.

"It's essential to not only name a health care surrogate, but to give that surrogate direction about treatment you want to have and treatment you don't want to have," said Aging With Dignity President Paul Malley.

Oklahoma Attorney General W.A. Drew Edmondson, who the AMA has recognized for his advocacy of better end-of-life care, echoed Malley's point that advance directives can work in both directions.

"It doesn't always have to be that you want to terminate life support," he said. "You can also say that you want everything possible done for as long as possible."

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Preparing for patient questions

Physicians may feel uncomfortable talking to patients about end-of-life care, but doctors should be aware that the conversation can create even more anxiety for patients. Here are some questions experts say that physicians can expect from patients, along with some suggested answers.

Question: Why do you want to talk about this?
Answer: I talk about this with all my patients.

Question: Are you bringing this up because there's something wrong with me?
Answer: No, but it's best to address this before there's a problem.

Question: I'm fine. Why do we have to talk about this?
Answer: Accidents happen, and people can become incapacitated at any age. It's important to let people know what your choices are just in case there comes a time when you can't speak for yourself.

Sources: Arthur Derse, MD; J. Russell Hoverman, MD, PhD; Aging With Dignity; Respecting Choices

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What the AMA has to say

The American Medical Association Code of Medical Ethics policy on life-sustaining medical treatment is patient-oriented. Here is the guidance that it offers to physicians:

  • Patients have a right to participate in medical decisions and can refuse treatments even when the refusal likely will result in death.
  • Life-sustaining treatments should provide medical benefits and should respect a patient's preferences. Once under way, treatments may be withdrawn at the patient's request. A surrogate or court acting on the patient's behalf also can ask that the treatments be stopped.
  • When a patient cannot participate in the decision-making process and there is no advance directive, disputes might arise about what the patient would have preferred. The goal should always be to respect the rights and dignity of the patient.

Source: AMA policy statement on life-sustaining medical treatment

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Going to the Internet

An increasing number of patients might come to your office armed with information about living wills, advance care directives and end-of-life care as organizations that provide information on the topics report huge increases in requests for forms and information since the Schiavo case has been in the media spotlight.

Organization Typical requests Current requests
California Medical Assn. 350 weekly "hits" for advance directive kits Almost 10,000 weekly downloads
Aging With Dignity 100 orders of "Five Wishes" shipped daily 3,000 to 4,000 shipped daily
Center for Practical Bioethics 10 to 15 daily downloads of "Caring Conversations" 300 daily downloads

Sources: California Medical Assn., Aging With Dignity, Center for Practical Bioethics

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