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Hurley, Dan


Hordes of patients have been asking neurologists how to complete advance directives in the wake of the highly publicized and protracted struggle over Terri Schiavo's fate – but that doesn't mean neurologists are prepared to answer them.

“At Dartmouth-Hitchcock Medical Center, we've had thousands of inquiries, people calling and asking, ‘How do I get an advance directive and how do I fill it out,’” said James L. Bernat, MD, Professor of Medicine (Neurology) at Dartmouth Medical Center. But a Neurology study he co-authored in 1999, which examined neurologists' beliefs and practices surrounding advance directives and other end-of-life issues, found what Dr. Bernat called a “disheartening degree of ignorance among our members.”

Michael A. Williams, MD, Associate Professor of Neurology at Johns Hopkins and Chair of the AAN Ethics Committee, agreed that inquiries have been pouring in from the public. But, he said, “I can't tell you for sure whether neurologists have become more comfortable talking about those issues with patients, or whether they are increasing their practice of doing so.”

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Experts such as Drs. Bernat and Williams have long been urging neurologists to begin an ongoing, thoughtful discussion about end-of-life planning with patients early in the course of any terminal disease. But more typical of many neurologists' ad hoc approach is a recent experience of Lisa M. Shulman, MD, Associate Professor of Neurology at the University of Maryland and Co-director of the Maryland Parkinson's Disease and Movement Disorders Center.

“I don't claim to have any expertise in this area of advance directives,” she said – but, then, neither do most neurologists.

A patient with advanced Parkinson disease she had been treating for some time came for a scheduled appointment accompanied by his wife and daughter. When they began talking about his new difficulty swallowing, his increasing falls, and worsening cognitive deficits, Dr. Shulman had to tell them the full implication of these symptoms. Tears welled up in the eyes of both wife and daughter, and they became overwrought. After sitting quietly for a short while, Dr. Shulman asked them what their feelings were about inserting a feeding tube. They responded that they were against it. She assured them that she would be there for them if they ever needed to call. A month later, the Parkinson patient died.



“Physicians are generally not trained to deal with this in a formal fashion,” Dr. Shulman said. “It's a problem as a clinician when you appreciate that the patient's or the family's need for hope is strong, and that your discussion of these issues could be extremely upsetting. At times, the patient and the family are at different stages of readiness for this discussion.” After all, she said, physicians are used to providing hope to their patients. “Shifting gears from offering hope to discussing advance directives can be difficult.”

Difficult, but hardly impossible. “One group of neurologists who have for years done a really good job of this are those who specialize in ALS,” said Dr. Williams. He noted that a 2001 study in Neurology found that 89 percent of ALS patients had an advance directive when they died, that their wishes were carried out in nearly 90 percent of the cases, and that 91 percent of the deaths were judged by family members to have been peaceful. “That's the best example of neurologists working with patients and families to anticipate death,” said Dr. Williams.

But extrapolating the experience of patients with ALS to most other neurological patients is problematic. ALS, after all, is a rapidly progressive terminal disease for which discussions of advance planning may be expected by patients and physicians. However, as Dr. Shulman pointed out, “There are effective treatments for chronic disorders like Parkinson disease, multiple sclerosis, and epilepsy, and patients with these diseases can live for decades following diagnosis. These patients' families may be much less prepared for end-of-life care discussions with their physician.”

The seeming remoteness of a patient's death is but one of many obstacles standing before neurologists and their obligation to help patients plan for the inevitable, Dr. Shulman said.

Even so, major obstacles stand between most neurologists and their obligation to help patients plan for the inevitable.

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As the 1999 study co-authored by Dr. Bernat found, ignorance among neurologists about the legal and ethical issues surrounding advance directives is immense. Among the neurologists surveyed, 40 percent incorrectly believed they had to talk to a lawyer before ending life-sustaining treatment, and 38 percent thought they could be charged with a crime for doing so – whether or not the patient had signed an advance directive saying he wanted to avoid that kind of treatment. In an editorial accompanying another study published that same year in Neurology, Dr Bernat wrote: “Refusal of life-sustaining treatment is simply a patient's decision not to provide consent, without which physicians usually cannot continue treatment.”

Many doctors also mistakenly assume that raising the topic of an advance directive will be upsetting to patients. But a 1991 study in the New England Journal of Medicine found that 93 percent of patients were interested in discussing the subject. Even so, only 15 percent of their doctors or nurses had ever broached the subject. Those whose doctors had discussed it, however, were three times more likely than others to have prepared an advance directive.

“Patients and their families expect doctors to conduct this talk with them,” said Dr. Williams.

Time and money are two other key obstacles in busy practices. “My response is, ‘it's your choice to make the time’,” said Dr. Williams. “Reimbursement plays into that. But if you document the time you spend talking with a patient, you can use that for billing purposes. The CPT codes have always said that if you spend more than 50 percent of your time counseling the patient, you can indicate how much time you spent on counseling and bill an appropriate amount for that.”

Even so, when Dr. Bernat testified before the US Senate during debate on the Schiavo matter last April, he urged lawmakers to support a bill pending before Congress to identify a new DRG that would specify time spent on discussing end-of-life care.

Another obstacle is that few neurologists have received any training in how to discuss advance directives with patients. To remedy that problem, an educational session on palliative care has been held at the past two AAN Annual Meetings, and likely will continue to be offered annually, Dr. Williams said.

Even so, AAN might still do more to facilitate patients' planning for advance directives, said Murray G. Sagsveen, the Academy's general counsel. Although the AAN Web site ran a special page about advance directives in the months immediately following Schiavo's death, by the autumn not even Mr. Sagsveen could find the article on the site anymore. And the AAN does not offer a printed brochure about the subject for neurologists to distribute to their patients, he pointed out.



“The Academy may need to rethink the information we give to our members to assist them,” Mr. Sagsveen said.

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Similar problems exist with when and how to discuss the issue of autopsy with patients and their families. The idea of doctors waiting until a patient is in the neuro-intensive care unit to have a single talk about end-of-life care is as wrong-headed, experts agree, as waiting till children turn 13 before their parents tell them where babies come from.

“I ask myself, would I be surprised if this patient died?” said Tyler Reimschisel, MD, Assistant Professor of Pediatrics, Neurology and Genetics at Washington University in St. Louis. “If the answer is no, that's a good indication that I need to have the conversation. Not that the patient is terminal – the best time to talk is when the patient is stable – but given how severe the illness is, and how many health problems the patient has, would I be surprised?”

Even in neurodegenerative diseases that take years to reach a terminal stage, as with Alzheimer disease, the subject should be raised as early as possible – the sooner the better. And the first conversation should hardly be the last, Dr. Reimshisel said. “It should not be something that's viewed as a discussion you have once and then exit. It's important to raise the topic more than once and not have the entire discussion in one setting. It takes time.”

How much time is a matter of some disagreement. Dr. Williams said he thinks that 30 to 45 minutes might be necessary, at least initially, for a thoughtful conversation involving not only the patient but also his or her family and, possibly, a social worker or other mental health professional.

But as a 2001 review article in Neurology noted, patients say these conversations average just three minutes in length. While a longer talk may be useful in helping patients sort through the complex issues involved, doing so would require a change in many neurologists' habits and practice, said Dr. Shulman.

“The far easier way for the practicing neurologist,” she said, “would be to have a brochure or handout to distribute routinely to all patients who visit the office.”

In fact, that kind of quick, standardized approach with all patients is exactly what Mr. Sagsveen recommends. “Any physician will tell you that they have limited time with patients,” he said. “If the neurologist would simply say, ‘Do you have an advance directive? If not, here's something you might find useful,’ I think that would be an incredible service to all patients and wouldn't take more than a few seconds.”

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Charles P. Sabatino, an attorney and Director of the American Bar Association's Commission on Law and Aging, agreed that while a lengthy conversation between doctor and patient would be ideal, “As a secondary strategy, having tools to give patients that would help them think about these issues is a very good idea.”

None of the experts recommend simply pushing a legal form into patients' hands, since most patients are likely to have profound misunderstandings about both the legal and medical issues involved. Rather, all recommend the “Consumer's Tool Kit for Health Care Advance Planning” developed by the ABA commission headed by Mr. Sabatino (see “Tools for Your Patients”).

Even then neurologists should make a point of discussing patients' intentions after they've had a chance to use the tool kit – for three important reasons. First, said Dr. Williams, “Patients often have major misunderstanding about the nature of some medical interventions.” Second, he continued, “Particularly for patients with chronic disorders, their wishes and their views on life-sustaining therapies may change as their own experience with life or their illness progresses.” And finally, he said, “Talking assures the patient that the physician who is actually responsible for carrying out the patients' wishes knows what those wishes are.”

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Although it's a trap that many neurologists fall into, probably the worst time to first raise the subject of an advance directive is when breaking bad news. “The only time I would break bad news and talk about end-of-life decisions during the same conversation would be in an intensive care setting,” said Dr. Williams. “In the outpatient setting, there's no reason to clobber a patient twice. They are going home and will be pretty shaken up. So long as you have an ongoing relationship, you can put it in your notes that you need to address advance directives in the near future.”



When the time is right for the first conversation, don't make it all about what the patient doesn't want done. “In fact the advance directive is simply for patients to say what they do want, one way or the other,” said Dr. Williams. Palliative care and the use of analgesics that risk respiratory depression are one such question to ponder.

As important as a good conversation is to planning an advance directive, don't assume that a signed form is a mere formality that can be foregone. While a form can never anticipate all the possible scenarios that might play out, it sometimes can play a crucial role when the patient is no longer competent and family members disagree on how to proceed, as the Schiavo case made clear.

“If she would have had a document, we wouldn't have had endless hearings to determine what her wishes were,” said Mr. Sagsveen.

And don't assume that only the very old or infirm need to prepare an advance directive, another faulty notion the Schiavo case should have put to rest. “You don't plan the time of your passing,” Mr. Sagsveen said. And he speaks from experience, having weathered the unexpected loss of his own brother, who died last year at the age of 54.

While few if any neurologists keep the legal documents on hand to give to patients, don't assume you must send patients to a lawyer to get the forms filled out. “They do not need to get a lawyer,” said Mr. Sagsveen. In fact, he said, “I would recommend not going to a lawyer. It's an expense and most lawyers aren't familiar with these issues.” Rather, he said, patients should be directed to the ABA Web site run by Mr. Sabatino, where forms valid in each state can be printed out.

All patients should also be asked, either when taking their history or on the intake questionnaire, who they would like to make decisions about their care in the event that they can no longer make them for themselves.

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When dealing with pediatric cases, of course, it is generally impossible to obtain an advance directive from the patient, said Michael Shevell, MD, Professor of Neurology, Neurosurgery and Pediatrics at McGill University School of Medicine in Montreal and Chair of the Ethics Committee of the Child Neurology Society.

“You usually act on the best-interest model,” he said. Parents are the ones with whom the neurologist must speak about end-of-life care, and in those cases, the best resource is often another parent locally who has gone through the same thing. “For parents struggling through the situation, it gives them a personal perspective that cannot be replaced by expert opinion,” said Dr. Shevell, who maintains a list of parents who have agreed to speak to other parents for just such occasions.

One last thing a neurologist should do: be realistic about their own capacity to deal with this subject with their patients. “All people should recognize their own limitations,” said Dr. Shevell. “Realize that no matter where your practice is, there are always resources available to you.”

Neurologists who are uncomfortable talking about advance directives can sometimes work with the patients' family physician, or with a colleague. But, Dr. Williams said, “This is not a job for a nurse. Patients and families expect doctors to conduct this talk with them.”

Neurologists can meet that expectation with just a bit of preparation, care, and compassion.

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  • ✓ Neurologists are urged to begin an ongoing, thoughtful discussion about end-of-life planning with patients early in the course of any terminal disease.
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  • Living Will: written instruction that allows you to spell out your medical treatment wishes (usually about life support) if you become unable to speak for yourself.
  • Durable Power of Attorney: a document by which one person (the “principal”) gives legal authority to another (called the “agent” or “attorney-in-fact”) to act on behalf of the principal in financial and property management matters. “Durable” means that the agent can act when that person loses capacity.
  • Health Care Power of Attorney (or Health Care Proxy): similar to a Durable Power of Attorney for property management but directed exclusively at health care concerns.
  • Advance Directive: a document that includes a Health Care Power of Attorney and a Living Will.

American Bar Association Commission on Law and Aging

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The most widely recommended resource to help patients plan their advance directive is the “Consumer's Tool Kit for Health Care Advance Planning,” created by the ABA Commission on Law and Aging. More than just an informational brochure, it includes many worksheets to help patients explore their preferences and discuss them with family and physicians.

Another helpful resource from the ABA Web site is “Health & Financial Decisions: Legal Tools for Preserving Your Personal Autonomy.” The publication defines and breaks down the process for establishing a durable power of attorney, a trust, and health care power of attorney, and other legal tools for planning decisions.

The tool kit, along with dozens of helpful links to state Web sites where forms can be downloaded, is available online at Neurologists can print out the tool kit (it's only about 20 pages long) and have copies ready for patients who do not have access to the Web. (The ABA created the tool kit resource for both doctors and lawyers to hand out at no fee.) For Web-savvy patients, neurologists can give them the URL and encourage them to use it.

©2005 American Academy of Neurology