Journal of palliative medicine
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Care consistent with preferences is the goal of advance care planning (ACP). However, comparing written preferences to actual end-of-life care may not capture consistency of care with preferences. ⋯ Simply comparing documented preferences for end-of-life care and medical records of care delivered does not adequately reflect the process of ACP and treatment decision making at the end of life. To understand consistency between preferences and end-of-life care, investigators need data on written and real-time expressed preferences.
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Physicians worry that disclosure of prognostic information can be distressing and deprive families of hope. Retrospective studies have shown that prognostic disclosure does not abrogate hope, but prospective data are lacking. ⋯ Many parents consider prognosis communication to be both difficult and necessary. While upsetting, prognostic information engenders hope by helping parents feel prepared to do their best for their children in the difficult days to come.
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Discussions about end-of-life (EOL) values, wishes, and beliefs are critical for effective advance care planning (ACP). New strategies are needed to engage individuals in EOL conversations. ⋯ This study established that healthy volunteers enjoyed engaging in a two-hour discussion about EOL issues when framed as a game. The game experience was a positive, satisfying, and enjoyable activity for participants. Further studies are needed to determine if health games can promote effective ACP.
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End-stage renal disease is a life-limiting illness associated with significant morbidity. Half of all individuals with end-stage renal disease are unable to participate in decision making at the end of life, which makes advance care planning critical in this population. ⋯ Palliative medicine consultation during in-center outpatient hemodialysis was well received by patients and clinical staff. Patients' symptoms were well managed at baseline by the primary nephrology team. The frequency of goals of care documentation and clarification of code status improved significantly. Embedded palliative medicine specialists on the dialysis care team may be effective in improving multidisciplinary patient-centered care for patients with end-stage renal disease.