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 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 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. Such discussions enabled patients and families to reconcile their differences about end- of-life care and could help the family and physician come to agreement if they should need to make decisions for the patient.
Opportunities for advance planning discussions Research indicates that physicians can conduct advance care planning discussions with many patients during routine outpatient office visits. Hospitalization for a serious and progressive illness offers another opportunity. The Patient Self-Determination Act requires facilities such as hospitals that accept Medicare and Medicaid money to provide written information to all patients concerning their rights to refuse or accept treatment and to complete advance directives. Patients often send cues to their physicians that they are ready to discuss end-of-life care by talking about wanting to die or asking about hospice. Certain situations, such as approaching death or discussions about prognoses or treatment options that have poor outcomes, also lend themselves to advance care planning discussions. Predicting when patients are near death is difficult, but providers can ask themselves the question: are the patients “sick enough today that it would not be surprising to find that they had died within the next year (or few months, or 6 months)”? A five-part process has been suggested to guide structured discussions about end-of-life care: 2 1. Initiate a guided discussion. During this discussion, the physicians should share their medical knowledge of hypothetical scenarios and treatments applicable to a patient’s particular situation and find out the patient’s preferences for providing or withholding treatments under certain situations. The hypothetical scenarios should cover a range of possible prognoses and any disability that could result from treatment. By presenting various hypothetical scenarios and probable treatments and noting when the patient’s preferences change from “treat” to “do not treat,” the physician can begin to identify the patient’s personal preferences and values. The physician can also determine if the patient has an adequate understanding of the scenario, the treatment, and possible outcomes. One study indicated that elderly patients have enough knowledge about advance directives, CPR, and artificial nutrition/hydration on which to base decisions for treatment at the end of life, but they do not always understand their realistic chances for a positive outcome. 11 Other research indicates that patients significantly overestimate their probability of survival after receiving CPR and have little or no understanding of mechanical ventilation. 12 After patients were told their probability of survival, over half changed their treatment preference from wanting CPR to refusing CPR. Patients also may not know of the risks associated with the use of mechanical ventilation, such as neurological impairment or cardiac arrest.
2. Introduce the subject of advance care planning and offer information. Patients should be encouraged to complete both an advance directive and durable power of attorney. The patient should understand that when no advance directive or durable power of attorney exists, patients essentially leave treatment decisions to their physicians and family members. Physicians can provide this information themselves; refer the patient to other educational sources, including brochures or videos; or recommend that the patient talk with clergy or a social worker to answer questions or address concerns. 3. Prepare and complete advance care planning documents. Advance care planning documents should contain specific instructions. The standard language contained in advance directives often is not specific enough to be effective in directing care. Many times, instructions do not state the cutoff point of the patient’s illness that should be used to discontinue treatment and allow the person to die. Terms such as “no advanced life support” are too vague to guide specific treatments. If a patient does not want to be on a ventilator, the physician should ask the patient if this is true under all circumstances or only specific circumstances. 4. Review the patient’s preferences on a regular basis and update documentation. Patients should be reminded that advance directives can be revised at any time. Although studies show that patient preferences are stable over time when considering hypothetical situations, patients often change their minds when confronted with an actual situation or as their health status changes. 13 Some patients who stated that they would rather die than endure a certain condition did not choose death once that condition occurred. Other research shows that patients who had an advance directive maintained stable treatment preferences 86 percent of the time over a 2-year period, while patients who did not have an advance directive changed their preferences 59 percent of the time. 14 Both patients with and without a living will were more likely to change their preferences and desire increased treatment once they became hospitalized, suffered an accident, became depressed, or lost functional ability or social activity. Another study linked changes in depression to changes in preferences for CPR. 15 Increased depression was associated with patients’ changing their initial preference for CPR to refusal of CPR, while less depression was associated with patients’ changing their preference from refusal of CPR to acceptance of CPR. It is difficult for people to fully imagine what a prospective health state might be like. Once they experience that health state, they may find it more or less tolerable than they imagined.
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