Mrs. Paterson was brought to the CPMC Emergency Department with severe anoxic brain damage after choking on a piece of meat. An 87-year-old woman who had lived with a dense motor deficit since a CVA 12 years ago, she had not signed an advance directive. Upon her admission to the hospital, two daughters, a son, two grandchildren, and a live-in boyfriend vied for control over her medical care. Her distress was unduly prolonged by intubation and multiple intensive care procedures until family members achieved consensus on the appropriate limits of medical intervention.

Mrs. Paterson’s plight is not uncommon in American hospitals. Most doctors have experienced tremendous conflicts, both within themselves and among family members, when serious illness develops in the absence of explicit directions from the patient regarding the extent of desired medical care. Ideally, patients adopt advance directives - in the form of a health care proxy or living will - and discuss their wishes regarding end-of-life care with their proxy and their doctor prior to the onset of life-threatening illness. As required by federal law and many state laws (including New York State), patients are supplied with information about advance directives at the time of hospital admission. However, despite the support of doctors and patients for advance directives, few patients have signed such documents or have had such discussions with their physicians.^,

When patients are asked why they have not completed an advance directive, they most frequently mention that their doctor did not bring up the subject. When doctors are asked why they have not discussed advance directives with their patients, they cite time constraints and lack of comfort in discussing such emotion-laden topics as primary reasons. In addition, those surveyed doctors who did not believe that advance directives were appropriate for all patients and who did not know how to obtain an advance directive were less likely to complete them with their patients. One study found that when medical residents speak with patients about DNR status or end-of-life planning, they lack good communication skills: they fail to provide information regarding heroic medical treatments, they do not elicit the patient’s values regarding prolongation of life, they dominate the conversations, and they miss opportunities to discuss patients’ concerns and values. Some physicians refrain from initiating discussions with patients about advance directives because they fear that such discussions will cause psychological pain to patients, raise suspicions about the physician’s commitment to caring for them, or trigger unreasonable doubts about their health status. However, when carried out skillfully, such physician-initiated conversations are often welcomed. While some patients are unwilling to discuss these issues no matter how they are approached, many find frank talk about end-of-life issues appropriate and comforting.

Doctors have learned that routine office visits are a more conducive setting than the acute-care hospital in which to have such conversations. Without the dislocation and anxiety of a hospitalization, the patient and doctor can discuss - over a series of office visits - the patient’s values and beliefs regarding care in the face of terminal illness, thereby giving the doctor important clinical information about the patient and laying the ground-work for appropriate care should devastating illness occur. Consequently, many office practices, including ours, have encouraged discussions about advance directives during routine office visits with stable medical patients.

Several steps occur as a physician and patient discuss advance directives. The better prepared the physician is to initiate and guide the discussion, the more productive the conversation will be. Clinicians should be aware that cultural differences regarding end of life care are profound. Entering a discussion of advance directives with a bias about the most appropriate outcome will prevent effective listening. Opening such discussions takes courage and the willingness to probe areas of patients’ lives often excluded from instrumental medical care: their willingness to suffer, their beliefs about the afterlife, and their awareness of their mortality. It takes as well a dose of medical humility, admitting that all medical treatment ultimately fails. Discussions of advance directives can be seen as five steps:

Raising the topic Facilitating a discussion Completing and recording a statement Periodically reviewing and updating it Using prior statements of wishes to bear on medical discussions

Physicians can raise the topic of advance directives with all patients as a matter of routine. Introducing the topic by saying, "This is something I speak with all my patients about" helps to prevent alarm or a sense of abandonment that an unprepared patient may feel on hearing a doctor discuss end-of-life issues. The patient’s knowledge, personal experience (for example, assisting family members through terminal illness), and prior discussions with health professionals should be elicited. The topic need not be covered in one office visit; a patient may be given written material about advance directives on one visit with a suggestion that the patient review the material and discuss it at the next visit. Obviously, a patient requires the intellectual and neurological capacity for judgment in order to participate in such discussions. Should cognitive or psychiatric disorders preclude the patient’s participation, due documentation should be made of the patient’s incapacity and an appropriate surrogate should be chosen.

The skills required of any empathic communication about illness are required in the discussion of advance directives - the ability to assess a patient’s emotional response to an issue, nonjudgmental interpretive listening, and conveying support and respect. The better a physician understands his or her own feelings about this topic, the more useful he or she will be in guiding a patient to discuss end-of-life care. The physician may want to include the proxy in the discussion of the advance directive. Depending on the patient’s clinical status, the physician may want to begin with a general discussion of abstract possibilities or may want to examine specific medical situations that can be foreseen for an individual patient. Using specific hypothetical situations separate from the patient’s underlying medical problems, for example, a motor vehicle accident, often helps to frame these discussions.

In all cases, information must be conveyed to patients about the meaning of advance directives, and values must be elicited regarding end-of-life care. Although doctors cannot understand each patient’s existential core self in great detail, we ought to understand what each patient would consider "a fate worse than death." Doctors should understand what patients’ goals would be in a range of scenarios: chronic terminal illness, acute illness perhaps amenable to heroic treatment, and care in the face of medical futility. Repeating patients’ words to check for accurate understanding as each type of scenario is discussed is critical.

The written and signed advance directive is the effector arm of the end-of-life care discussion. Presbyterian Hospital supplies blue and white "Health Care Proxy" forms with space for the name of the patient, the name and address of the appointed health care proxy, and the name of an alternate proxy. The patient is given room to write instructions regarding general or specific wishes. Ideally, the patient or the doctor can summarize the end-of-life discussion in writing, detailing specific aspects of care that the patient has enumerated. Sometimes the most helpful instructions are such general statements as, "I wish to receive any medical care that my doctors believe would restore my health. However, should I be terminally ill with virtually no chance of recovery, I request that my life not be artificially prolonged." Some patients elect to leave all decisions in the hands of the health care proxy without articulating specific instructions. The Health Care Proxy form asks for an expiration date, if any, for the proxy appointment. Finally, the patient and two adult witnesses must sign the form. Although the health care proxy cannot be one of the signers, other family or friends, the doctor, or clinic nurses or receptionists may witness the document. The original document is filed in the Patient Relations Office, and copies are provided to the patient, the hospital chart and the primary care physician’s files. It is also prudent to write a brief note in the freetext "notes" section of WebCIS.

Periodically, the Health Care Proxy document should be reviewed with the patient. There may be changes in the patient’s situation that require a change in the proxy appointment. As patients age or sicken, their wishes about terminal care may change. Although such wishes seem to be quite stable over time, patients should be given all opportunities to change their directives whenever they choose.

The final step in advance directives is to use them to guide care in the acute setting. Although health proxies have discussed a patient’s wishes, they may need support and guidance in putting the patient’s wishes into practice. No advance discussion can have covered all possible medical occurrences, and health proxies may need assistance in applying general statements to particular situations. The primary care physician, with his or her knowledge derived from prior discussion with the patient, is a critical participant in faithfully reproducing the patient’s wishes for end-of-life care.

We thank Dr. Kenneth Prager for helpful comments and suggestions.