ABSTRACT
Palliative care has made great strides in improving the lives of people living with serious illness, with an empirical premise for increasing quality, and sometimes quantity of life. Yet in some cases, there exist gaps that impede the ability of palliative care clinicians to truly advocate, procure, and provide the comprehensive services needed for patients, family caregivers, and communities, particularly in the contexts of caring for marginalized populations and working in under-resourced practice settings. The end-of-life doula role has emerged over the last decade and the availability of trained doulas in the community has burgeoned. An end-of-life doula is a nonmedical, holistic support person who provides education, guidance, emotional, spiritual, and practical support to persons and families navigating serious and terminal illness, ideally early in the disease process, throughout the time surrounding death, and during bereavement. A pervasive Western culture of avoiding the subject of death means that we, as a society, often do not know or remember how to navigate the journey of end of life in a way that is caring, compassionate, skilled, holistic, and centered on the needs and worldview of the dying one. The ten tips provided here can guide palliative care clinicians to leverage collaboration with trusted, community-based end-of-life doulas to ensure comprehensive and people-centered palliative care.
ABSTRACT
BACKGROUND: The majority of U.S. cancer patients express the desire to die at home, though most do not, and are often subjected to ineffective therapies near the end of life (EOL). In 2008 the U.K. Department of Health and National Health Care Service implemented a set of 10 quality markers to improve EOL care (EOLC) for seriously ill persons. Data show that this intervention has had a positive impact on patients' EOLC. PURPOSE: The study assessed the quality of EOLC received by terminally ill cancer patients admitted to the intensive care unit (ICU) in the last two weeks of life. DESIGN: A retrospective chart review was done of the electronic medical record (EMR) of 2498 patients admitted to the ICU from January to August 2011. The six U.K. quality indicators pertaining to patients were used to assess quality of EOLC. SETTING: The setting was a tertiary academic medical center with 663 beds and 66 adult ICU beds in northern California. PATIENTS: EMR analysis identified 2498 patients admitted to the ICU during the study period--232 died within two weeks of admission. Sixty-nine decedents had metastatic cancer. Of the patients, 58% were male, average age 59.8 years (range 25-91). RESULTS: Quality indicators were met in a relatively small percentage of patients admitted to the ICU in the last two weeks of life: prognostication 67%, advance care planning 32%, goals of care 42%, caregiver needs 0%, coordination of care across organizational boundaries 7%, and standardized care pathway implementation 58%. Palliative care consultations occurred in 28 patients. CONCLUSIONS: Quality indicators for EOLC were unmet in cancer patients admitted to the ICU in the last two weeks of life. Hospital-wide provider education about the need for early advance care planning with all seriously ill patients has been implemented in an effort to improve quality of care at EOL.
