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End-of-Life Decisions by Susanna Donato The conundrum of how to manage end-of-life decisions isn’t new, but interest in the issue is perhaps at an all-time high following intense national debate about Terri Schiavo, the Florida woman whose family battled over whether to end life support while she spent 15 years in a vegetative state. “If Terri Schiavo had done [advance directive] documents and delivered them to her physicians, we would never have heard of her,” said Barry Zimmer, a Cincinnati attorney. “Even in their absence, if her clear intent had been expressed to her family members, the case would not have gone as far as it did.” Few Americans have advance directives in place, according to Gail Gazelle, M.D., a palliative care specialist in Boston. “Most studies show that it’s, at best, 20 percent of the adult population,” she said. “The figure is similar to estate planning: only about one in five seniors has [prepared] a will.” Still, advance directives — written instructions regarding the level and type of medical treatment a patient desires at the end of life — remain a sensitive topic. Some physicians might hesitate to address advance directives, as Florida’s Boca Raton Community Hospital found. Stefanie Schwartz, Ph.D., the hospital’s director of palliative care, recently conducted a survey there regarding advance directives. “Many more people say they want their physician to talk to them about advance directives than say their physician has talked to them — by a ratio of 80 percent to 30 percent,” Schwartz said. Physicians can close that gap by raising the subject with patients well before an advance directive is needed.
Know the basics The terms “advance directive” and “living will” are generally interchangeable; both refer to a document that describes decisions a person wants made about his or her health care when he or she “suffers from a terminal condition or permanent state of unconsciousness and is medically incompetent,” according to Philadelphia attorney Gary Zlotnick. The document — or an accompanying form — also can name a health care proxy, the individual whom the patient nominates to make decisions when he or she becomes medically incompetent. “Every adult should have an advance directive. Without it, physicians won’t have a clear indication of intent for end-of-life medical care,” said Zimmer. “That can lead to family fighting or a case tied up in the courts for years, while the patient lies in bed under life support and suffers the most.” Gazelle suggests that physicians should bring up advanced directives with all patients, or certainly patients over a certain age. “Using age as a cutoff is not ideal, but it may be most pragmatic,” she noted. “We barely have time to get through a schedule as it is. So pick an age — 50 or 65 — to help normalize those discussions. Then, if the patient looks alarmed, you can say, ‘I bring this up with everybody over the age of 55.’” To begin, give patients written information to take with them, review and discuss with their loved ones. Then, ask patients to bring a copy of the signed forms to include in their medical chart. In most states, the forms must be signed in the presence of two witnesses. Zimmer reports that some physicians ask patients to bring the form to an appointment with their health care proxy, then review and sign the form with the physician. Proxies and paperwork Gazelle believes the most important task is for patients to choose a health care proxy. “No doctor can predict what your goals are,” she said. “The point is to keep it individual, to allow people to remain in the driver’s seat of their life when they are unable to verbalize or write down their wishes.” Beyond just naming a proxy, encourage patients to discuss their specific desires with their health care proxy. “Some documents … help people articulate their values and goals and translate those into medical actions to help achieve those goals,” Gazelle explained. A popular document to help with that process, Five Wishes, is available online (see Web Resources below). Zlotnick also suggests that patients designate a health care power of attorney. That form also should be included in the medical chart, attached to the living will.
Be specific Blanket advance directives have one common flaw, which is that they typically specify whether patients want “heroic measures” to be used in the case of medical incompetence. The problem is that many types of life support are available, and the desire for each is very individual. “A patient might want certain treatments, despite the overriding ‘no heroic measures’ clause,” Zlotnick said. Some state forms are very specific to avoid confusion. Zimmer creates for his clients a nonlegal document that lists various medical conditions and diagnostic procedures, giving patients “the opportunity to indicate ‘I want this; I don’t want this; I want to do a trial period, and, if there’s no clear improvement, terminate,’” Zimmer said. “If clients don’t know how to fill out that extra form, I advise them to sit down with their doctor and go through the different scenarios that could happen and determine what they want.” Accessibility matters
Zimmer recommends a patient provide a copy of the advance directive to all his or her physicians. “It also should be provided to clergy members, family members, the person who has the health care power of attorney and the attorney. The greater the level of communication of a patient’s desires, the less likely there is to be a dispute.” Zimmer also encourages the use of commercial services that store these documents and make them available to hospitals via fax or electronically within minutes of scanning a personalized ID card or other device. Several organizations store and provide access to advance directives nationwide. CMS regs, laws vary The federal Centers for Medicare and Medicaid Services (CMS) play a role with requirements regarding advance directives. CMS requires health plan companies with Medicare plans, as well as health care facilities, to have policies and procedures regarding advance directives, according to Barry Straube, M.D., acting chief medical officer and acting director, Office of Clinical Standards and Quality, for CMS. “It would be fair to say that CMS encourages the use of advance directives by physicians and beneficiaries, provider sites and health plans,” Straube said. “The commonality is that all facilities are required to maintain policies and procedures regarding advance directives. This allows each facility to develop policies with medical/clinical staff, governing boards and input from medical experts.” Universally, legal and health professionals agree that advance directives are an important tool to help patients receive the care they want and to help physicians provide good care while respecting the patient’s wishes. Despite varied statutes, advanced directives prepared correctly in any state must be recognized nationwide. When an advance directive is consulted, some hospitals have staff, such as Schwartz in Boca Raton, to ensure patients’ desires are met. Zimmer and Zlotnick both noted that this does not mean a physician must carry out a patient’s wishes; if he or she refuses on moral or ethical grounds. However, the physician must agree to transfer that patient to another physician or hospital. “A great deal of responsibility is placed on the physician,” Zimmer said. Check with your attorney to understand your state’s requirements, but most of all, plan to help patients prepare advance directives, for their sake and that of your practice.
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“Making
sure the advance directive is available is the most important factor,
beyond having it completed,” said Schwartz of Boca Raton Community
Hospital. “Patients should have a lengthy discussion with
their physician and with their health care surrogate, and be sure
those contacts are kept updated.”
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