● Only 12 percent of patients with an advance directive received input from their physician in its development. ● As many as three-quarters of physicians whose patients had an advance directive were not aware that it existed. ● Having an advance directive did not increase documentation in the medical chart regarding patient preferences. ● Advance directives helped make end-of-life decisions in less than half of the cases where a directive existed. ● Advance directives usually were not applicable until the patient became incapacitated and “absolutely, hopelessly ill.” ● Providers and patient surrogates had difficulty knowing when to stop treatment and often waited until the patient was actively dying before the advance directive was invoked. ● Language in advance directives was usually too vague and general to provide clear instruction. ● Surrogates named in the advance directive often were not present to make decisions or were too emotionally distraught to offer guidance. ● Physicians were only about 65 percent accurate in predicting patient preferences and tended to make errors of under-treatment, even after reviewing the patient’s advance directive. ● Surrogates who were family members tended to make prediction errors of overtreatment, even if they had reviewed or discussed the advance directive with the patient or assisted in its development. Research also shows that care at the end of life is sometimes inconsistent with the patients’ preferences to forgo life-sustaining treatment, and that patients may receive care they do not want. For example, one study found that patient preferences to decline cardiopulmonary resuscitation (CPR) were not translated into do-not-resuscitate (DNR) orders. 6 Another study found that patients received life- sustaining treatment at the same rate regardless of their desire to limit treatment. 7 Patients value advance care planning discussion According to patients who are dying and their families who survive them, lack of communication with physicians and other health care providers causes confusion about medical treatments, conditions and prognoses, and the choices that patients and their families need to make. 2 One study indicated that about one-third of patients would discuss advance care planning if the physician brought up the subject and about one-fourth of patients had been under the impression that advance care planning was only for people who were very ill or very old. 9 Only 5 percent of patients in this study stated that they found discussions about advance care planning too difficult. Other studies have shown that discussing advance care planning and directives with their doctor increased patient satisfaction among patients age 65 years and over. 10
Because physicians are in the best position to know when to bring up the subject of end-of-life care, they are the ones who need to initiate and guide advance care planning discussions. Such discussions are usually reserved for people who are terminally ill or whose death is imminent, yet research indicates that people suffering from chronic illness also need advance care planning. Most people who die in the United States (80 to 85 percent) are Medicare beneficiaries age 65 and over, and most die from chronic conditions such as heart disease, cancer, chronic lower respiratory diseases, stroke, diabetes, Alzheimer’s disease, and renal failure. 8 Only about 22 percent of deaths in people age 65+ are from cancer, which generally follows an expected course, or “trajectory,” leading to death. 8 Many maintain their activities of daily living until about 2 months prior to death, after which most functional disability occurs. In contrast, people with chronic diseases such as heart disease or COPD go through periods of slowly declining health marked by sudden severe episodes of illness requiring hospitalization, from which the patient recovers. This pattern may repeat itself, with the patient’s overall health steadily declining, until the patient dies. For these individuals there is considerable uncertainty about when death is likely to occur. Patients who suffer from chronic conditions such as stroke, dementia, or the frailty of old age go through a third trajectory of dying, marked by a steady decline in mental and physical ability that finally results in death. Patients are not often told that their chronic disease is terminal, and estimating a time of death for people suffering from chronic conditions is much more difficult than it is for those dying of cancer. When patients are hospitalized for health crises resulting from their chronic incurable disease, medical treatment cannot cure the underlying illness, but it is still effective in resolving the immediate emergency and thus possibly extending the patient’s life. At any one of these crises the patient may be close to death, yet there often is no clearly recognizable threshold between being very ill and actually dying. Patients who talked with their families or physicians about their preferences for end-of-life care had less fear and anxiety, felt they had more ability to influence and direct their medical care, believed that their physicians had a better understanding of their wishes, and indicated a greater understanding and comfort level than they had before the discussion. Compared to surrogates of patients who did not have an advance directive, surrogates of patients with an advance directive who had discussed its content with the patient reported greater understanding, better confidence in their ability to predict the patient’s preferences, and a stronger belief in the importance of having an advance directive. Finally, patients who had advance planning discussions with their physicians continued to discuss and talk about these concerns with their families.
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Book Code: CA23CME
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