___________________________________________ Palliative Care and Pain Management at the End of Life
• Lack of time for discussion and/or to address patient’s emotional needs • Uncertainty about prognosis • Fear about the patient’s reaction (anger, despair, fear) • Lack of awareness and inability to elicit the concerns of patients and their families regarding prognosis • Lack of strategies to cope with own emotions and those of patient and family • Feeling of hopelessness or inadequacy about the lack of curative therapies (perceived as “giving up”) Perhaps the greatest barrier to end-of-life care discussions is clinicians’ lack of confidence in their ability to talk about end- of-life issues, and research has confirmed a low rate of effective communication skills among clinicians, especially with respect to delivering “bad news” [62; 81; 155; 162]. The Australian/New Zealand communication guideline pro- vides several evidence-based recommendations for discussing end-of-life issues, and other experts have offered practical guid- ance to help clinicians discuss bad news and end-of-life care more effectively [117; 163; 164; 165]. These guidelines and expert recommendations emphasize communication behaviors that patients and families have noted to be most important, such as expression of empathy, acknowledgment and support of emotions, honesty, willingness to listen more than talk, and encouragement of questions [81; 117; 123; 147; 149; 164]. The most commonly recommended communication approach is SPIKES, a six-step protocol that was developed for delivering bad news in the oncology setting and can be used in other settings [163; 164]: • S etting (context and listening skills) • P atient’s perception of condition and seriousness • I nvitation from patient to give information • K nowledge—explaining medical facts • E xplore emotions and empathize as patient responds • S trategy and summary In establishing the setting, the clinician should ask the patient if he or she wishes to have a family member present for the conversation and should ensure that the discussion takes place in privacy [62; 164]. The clinician should also introduce himself or herself to the patient and any others present. With SPIKES, the setting also involves listening skills—the use of open-ended questions, clarification of points, and avoidance of distractions [164]. A 2024 clinical practice feature authored by palliative care experts provides practical guidance to clinicians on navigating and communicating about serious illness and end of life [529]. These experts suggest that rather than a single conversation, the task and the goals of communication over end-of-life issues can be achieved more effectively through a series of conversations conducted over a span of time, focusing on
the patient’s evolving ability to cognitively and emotionally integrate the likely course and expected outcome of the ill- ness [529]. This approach gives the patient time to integrate prognostic information, adjust emotionally to the impact of disease progression, and then, with growing discernment, express personal preferences for end-of-life care. The tendency of patients to oscillate between expressions of hopefulness and more realistic expectations should be considered a normal and expected part of the process. Patients require time and support to process their hopes and fears, to grieve, and to build coping skills required for living with a terminal illness. By partnering with the patient, demonstrating empathy, and engaging in a continuum of conversation over weeks to months, the clinician (in concert with other members of the care team) can better discern what is most important to the patient and incorporate these goals and values into decisions about therapy, including care at the end of life [529]. Bad news—even when delivered clearly and compassionately— can affect the ability of patients and family members to under- stand and retain information. To minimize misinterpretation, clinicians should use simple (jargon-free) language and open- ended questions and ask follow-up questions that include the patient’s own words [117; 164]. Clinicians should also check often to make sure the patient and/or family understands, as research has shown that clinicians tend to overestimate their patients’ understanding of end-of-life issues [166]. The discus- sion should focus on the importance of relieving symptoms and enhancing the quality of life, to avoid having the patient and/or family think that the clinician is “giving up” or aban- doning the patient [40; 117]. Clinicians should also provide educational resources in a variety of formats (print, Web-based, video, etc.) to address different learning styles. It was once thought that the ability to communicate effectively was innate and thus could not be taught [164]. However, mul- tiday communication skills training programs have enhanced the skills and behaviors of beginning and experienced physi- cians and nurses. These programs have improved clinicians’ use of more focused questions and open questions, expression of empathy, and appropriate responses to cues [167; 168]. Patient-related interventions have also helped to enhance end- of-life discussions. A structured list of questions and the use of individualized feedback forms regarding end-of-life preferences have led more patients to ask their physicians about end-of-life care [169; 170]. Discussing Prognosis Most patients say that they want to know their prognosis, and most clinicians believe that patients and families should be told the truth about the prognosis [122; 126; 150]. However, discussions of prognosis are lacking among clinicians and patients with life-limiting diseases. Across studies and surveys, fewer than half of patients have had a truthful discussion of prognosis [81; 108; 150]. Many physicians have said they dis- cuss prognosis only when asked by the patient or family [81].
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