Journal of palliative medicine
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Case Reports
Challenges of the Transition: A Case of Noncompliance in an Adult with Congenital Heart Disease.
There are more adults than children living with congenital heart disease (CHD) due to improvements in surgical and medical CHD management today. In 2011, though, fewer than 30% of adult CHD patients were following up with specialized providers. An ineffective transition from pediatric to adult-focused medical care can result in lapses in CHD medical care, patient noncompliance, and increased risk of late complications. Early involvement of a palliative care team offers development of autonomy, identification of potential barriers to care, and support for patient and family that may improve transition success and quality of life in CHD patients.
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Review
Do We Know What We Mean? An Examination of the Use of the Phrase "Goals of Care" in the Literature.
Background: There is no consensus approach to describe the process or components of goals of care (GOC) conversations. Objective: The objective was to review the utilization of the phrase "GOC" in PubMed-indexed literature to contextualize the use of the phrase. Secondary aim was to describe the use of this phrase within journals focused on palliative care. Methods: A review of articles in the PubMed-indexed literature published during a single year utilizing the phrase "goals of care." Results: A total of 191 articles were reviewed after exclusions. Few articles included an operant definition for GOC (n = 27, 14%). ⋯ The majority did not utilize the phrase "palliative care" (n = 77, 40%); those who did frequently used "palliative care" incorrectly (n = 72, 38%). Conclusions: The definition of the phrase GOC is most often assumed with its context centered on the needs of the health care system and linked to a specific medical topic. It is most commonly used to describe determinations of the patient's therapy intent, second most commonly to describe end-of-life conversations. The use of the phrase GOC within the palliative literature does not differ notably from its use in the broader literature.
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Background: End-of-life (EOL) care is an important aspect of practice in the intensive care unit (ICU), where approximately one of every five patients may die. Objective: The objective of this study was to describe clinicians' experiences with the 3 Wishes Project (3WP) and understand the influence of the project on care in the ICU. Design: The 3WP is a palliative care intervention in which clinicians elicit and implement final wishes for patients dying in the ICU; it had been implemented for seven months at the time of this study. This mixed-methods study includes quantitative data from clinician surveys and qualitative data from clinician focus groups. Setting: A 24-bed medical ICU in a tertiary academic center. Subjects: Perspectives of 97 clinicians working in the ICU during the study period were obtained by self-administered surveys. Five focus groups with 25 nurses and 5 physicians were held, digitally recorded, transcribed, and analyzed. Measurements and Results: During the 7-month period, 67 decedents and their families participated in the 3WP. The overarching concept identified through analysis of the survey and focus group data is that the 3WP improves EOL care in the ICU, which was supported by three main themes: (1) The 3WP facilitates meaningful EOL care; (2) The 3WP has a positive impact on nurses and physicians; and (3) clinicians observe a positive influence of the 3WP on families. Conclusions: This patient-centered and family-partnered intervention facilitates meaningful EOL care, favorably impacting the ICU team and positively influencing family members.
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Background: The University of Iowa Hospitals and Clinics (UIHC) has a palliative care (PC) volunteering program that has recruited college students since 2010. There is little research on the effects of PC volunteering on collegiate volunteers. Objective: The objective is to determine the impact of PC volunteering on college students' professional lives and on their interest in PC. Design/Setting/Measurements: The UIHC Volunteer Services office sent a 25-question survey with closed- and open-ended items to previous and current PC college volunteers. We used descriptive statistics to characterize the sample. ⋯ The unique exposure and interactions with PC patients and their families have changed volunteers' understanding of health care. PC volunteers speak in their social networks about PC. This experience may increase the likelihood of student volunteers to pursue careers in PC.
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Background: Palliative care can alleviate symptom burden, reduce psychosocial distress, and improve quality of life for patients suffering from serious or life-threatening illnesses. However, the extent to which U. S. adults are aware of or understand the goals and benefits of palliative care is not well understood. ⋯ Older individuals, those with higher educational attainment, women, and whites (vs. nonwhites) had greater odds of palliative care awareness. Conclusions: These data suggest there is limited awareness of palliative care in the United States, despite its documented benefits. Addressing this awareness gap is a priority to change norms around using palliative care services. Community- and population-based interventions are necessary to raise awareness and inform the public about palliative care.