Journal of palliative medicine
-
Although dignity is increasingly considered a goal of palliative care, little research has evaluated the understanding of dignity at the end of life from a caregiver's perspective. ⋯ It seems that SCEN physicians consider the physical aspects of suffering to be most influential and problematic in practice in preserving dignity, while volunteers think psychosocial aspects are most important in preserving dignity at the end of life. These findings suggest that the role and responsibilities of caregivers involved in care for terminally ill patients affect the factors that they think influence dignity.
-
Advance care planning (ACP) is a process of communication among patients, health care providers, and relatives regarding end-of-life care. The aim of our study was to determine if a representative sample of the Dutch general public is currently involved or is inclined to be engaged in ACP, and to delineate the factors associated with greater engagement. ⋯ Although the majority of the Dutch population seems open to discussions about end-of-life care, our study revealed that discussions with physicians are exceedingly rare. To improve ACP as a joint process among patients, relatives, and physicians, the general public's awareness of the importance of end-of-life discussions with their physicians needs to be increased and physicians need to play a more active role by initiating conversations and dialogue regarding end-of-life care.
-
The ambulatory care setting is a new frontier for advance care planning (ACP). While electronic health records (EHR) have been expected to make ACP documentation more retrievable, the literature is silent on the locations of ACP documentation in EHRs and how readily they can be found. ⋯ Only 33.5% of patients with ACP documentation somewhere in the EHR had an SD. Standardizing the location of these documents should become a priority to improve care. Actions are needed to eliminate disparities.
-
Awareness for pediatric palliative care in children with cancer increased in the last ten years in Germany. In this study we sought to determine whether this change in awareness led to improved palliative care outcomes in children dying due to cancer. ⋯ While the location of care during the end-of-life period shifted (from hospital to home), there remains substantial work to ease the suffering in children with cancer at end of life.
-
Research addressing the burden, assessment, and management of nonpain symptoms associated with advanced illness in older adults is limited. While nonpain symptoms such as fatigue, sleep, dyspnea, anxiety, depression, cognitive impairment, nausea, and anorexia-cachexia are commonly noted by patients and clinicians, research quantifying their effects on quality of life, function, and other outcomes are lacking and there is scant evidence regarding management. ⋯ Assessment and treatment of nonpain symptoms in older adults with serious illness and multiple comorbidities is compromised by the lack of data relevant to their care. Recommended research priorities address the documented high prevalence of distressing symptoms in older adults with serious illness, the unique needs of this population due to coexistence of multiple chronic conditions along with physiologic changes related to aging, the lack of evidence for effective pharmacologic and nonpharmacologic interventions, and the need for validated measures that are relevant across multiple care settings.