Case Study 1 Janet is an 83-year-old woman with amyotrophic lateral sclerosis (ALS). Her speech has become very slurred, she is having difficulty chewing and swallowing, and has lost 40 pounds over the course of the past 18 months. She has never liked what she calls the “medical establishment,” takes no prescription drugs, and prefers natural and alternative methods of dealing with health issues. Her neurologist and her three grown children are all concerned about her weight loss and growing frailty and have suggested she have a percutaneous endoscopic gastrostomy (PEG) tube placed so she can get more adequate nutrition and hydration. Janet, however, is not cooperating. She has delayed making a decision and appears unwilling to discuss the matter with anybody. She is now sitting in your office, with one of her sons present, and has just replied angrily to your statement that further delays in getting a feeding tube will hasten her death. “What if I don’t see the point in continuing to live, doctor?” she says, struggling to enunciate the words. “Has it crossed your mind that I might not enjoy living under these horrible conditions?” Questions 1. What would be a possible response to Janet’s outburst that would employ the technique of reflective listening? _______________________________________________________________________________________________ 2. How could you work with Janet to establish a set of care goals that would be appropriate for either course of action (i.e., having, or not having, the PEG placed)? _______________________________________________________________________________________________ 3. If Janet refuses the PEG, what steps could you take to make her final weeks more comfortable? _______________________________________________________________________________________________ 4. If Janet continues to feel as though her quality of life is not what she’d want to continue with, are there standardized approaches that could help you address her goals of care in a succinct, state-wide applicable document? _______________________________________________________________________________________________
Preference patterns for hypothetical situations Evidence suggests that patients are more likely to accept treatment for conditions they consider better than death and to refuse treatment for conditions they consider worse than death. Patients also were more likely to accept treatments that were less invasive such as CPR than invasive treatments such as mechanical ventilation (see Table 1). Patients were more likely to accept short-term or simple treatments such as antibiotics than long-term invasive treatments such as permanent tube feeding. Table 1. Treatment preferences among patients age 64 and over, from most- to least-preferred 21 Antibiotics Blood transfusion Temporary tube feeding Temporary respirator Radiation Amputation Dialysis Chemotherapy Resuscitation Permanent respirator Permanent tube feeding
It is telling that physicians, who are in a better position than others to judge the likely value of EOL services, often choose much less aggressive treatments for themselves than they offer to their patients. A study comparing 78 primary care faculty and residents with 831 of their patients found that the physicians were much less likely than the patients to want five of six specific treatments if they were terminally ill. 20 And 59% of the physicians chose “least aggressive” EOL treatment preferences for themselves. Acceptance or refusal of invasive and noninvasive treatments under certain circumstances can predict what other choices the patient would make under the same or different circumstances. Refusal of noninvasive treatments such as antibiotics strongly predicted that invasive treatments such as major surgery would also be refused. Research also reveals that patients were more likely to refuse treatment under hypothetical conditions as their prognosis became worse. For example, more adults would refuse both invasive and noninvasive treatments for a scenario of dementia with a terminal illness than for dementia only. Adults were also more likely to refuse treatment for a scenario of a persistent vegetative state than for a coma with a chance of recovery. More patients preferred treatment if there was even a slight chance for recovery from a coma or a stroke. Fewer patients would want complicated and invasive treatments if they had a terminal illness. Finally, patients were more likely to want treatment if they would remain cognitively intact rather than impaired.
Book Code: CA23CME
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