Instructions: Spend 5 minutes reviewing the case below and considering the questions that follow. 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?”
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?
Advance planning helps physicians provide care that patients want Most people will eventually die from chronic conditions. These patients require the same kind of advance care planning as those suffering from predictably terminal conditions such as cancer. Understanding preferences for medical treatment in patients suffering from chronic illness requires that physicians and other health care providers consider patients’ concerns about the severity of prospective health states, length and invasiveness of treatments, and prognosis. While predicting what patients might want is difficult, research offers some insights into treatment patterns and preferences under hypothetical situations that can give providers more insight into their patients’ desires under similar circumstances. By discussing advance care planning during routine outpatient visits, during hospitalization for exacerbation of illness, or when the patient or physician believes death is near, physicians can improve patient satisfaction with care and provide care at the end of life that is in accordance with the patient’s wishes. Suggested components of an individualized approach to EOL care are summarized in Table 2.
Patients prefer to receive such news in person, with the physician’s full attention, and in clear, easy-to-understand language with adequate time for questions. Most patients prefer to know their diagnosis, but the amount of desired details varies among different cultures and by education level, age, and sex. The physician should respect the patient’s unique preferences for receiving bad news. Physicians may experience stress related to providing bad news that extends beyond the actual conversation. For example, physicians may be afraid of eliciting an emotional reaction, being blamed for the bad news, and expressing their emotions during the process. Physicians often withhold information or are overly optimistic regarding prognosis, but this can lead to confusion for patients regarding their condition. There are several algorithms available to help guide the physician in the delivery of bad news, including the SPIKES protocol (see Table 3, pg. 56). Skillful delivery of bad news can provide comfort for the patient and family. BEFORE MOVING ONTO THE NEXT SECTION, PLEASE COMPLETE CASE STUDY 2 ON PG. 8.
Communicating life-altering news “ The best way to convey meaning is to tell people what the information means to you yourself. And there are three words to do that: “I am worried.” They were such simple words, but it wasn’t hard to sense how much they communicated. I had given her the facts. But by including the fact that I was worried, I’d not only told her about the seriousness of the situation, I’d told her that I was on her side—I was pulling for her. The words also told her that, although I feared something serious, there remained uncertainties—possibilities for hope within the parameters nature had imposed. ” 22 --Atul Gawande, MD Delivering bad or life-altering news to a patient is one of the most difficult tasks physicians encounter. 23 Ultimately, the determination of what is bad news lies not with the physician, but with the person receiving the news. Although classically related to cancer or a terminal diagnosis, bad or serious news may also include information related to diagnosis of a chronic disease (e.g., diabetes mellitus), a life-altering illness (e.g., multiple sclerosis), or an injury leading to a significant change (e.g., a season-ending knee injury). Most of the research into the delivery of bad news, however, has focused on patients with cancer and subsequently applied to the delivery of bad or serious news in non-oncologic settings.
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